I am hereby changing my chief complaint

Content Note: weight, weight gain, etc

At the pain clinic I go to, I fill out a form to track my pain management. One of the questions is about side effects of medications, and so far I've either listed "vertigo" or "weight gain." Which, okay the vertigo was debilitating for a whole month there and I agree with past me's assessment that it was my chief complaint. After the vertigo subsided, weight gain took its place on that line item on the survey. 

But after last week's near meltdown and subsequent days and days of being asleep, I realize that fatigue is the thing making my life go to hell at the moment. Don't get me wrong, the gabapentin really is addressing almost all of my nerve pain (hello look at me typing here for example!) but the trade off is that I am too deeply exhausted to really do anything. Which. Okay, I guess if I'm too tired to do any of the activities that trigger my nerve pain, then I won't have the nerve pain. But that's not exactly what I signed up for.

Being fatigued means I don't do my PT exercises or hula, or any other physical activities, as much as I need to keep my body afloat. I weigh more today than I did two weeks ago but I feel SO much better because I just gone done with PT and hula. I am sweaty and content. 

I am trying to back off on my gabapentin dose, going from 1200 to 800 mg a day. I'm also taking magnesium for muscle garbage, plus doing trigger point injections, acupuncture, deep tissue work (from my PT), and float tank sessions. It's day....three I think of cutting back and while the nerve pain has increased slightly, the benefit of being able to do my other pain work (and especially exercise) totally outweighs that. 

I'll have to leave it at that right now because the pain in my hand is returning from typing these few paragraphs. That sucks, but this is wayyyyy more typing / writing than I've been able to do in like  year, so it's still a huge victory.

Somebody please put the baby to sleep

After a week of feeling like I was going to die of the sads, I finally realized my problem was Dr. Pepper. Okay, so not really Dr. Pepper but totally Dr. Pepper because I got back into drinking it with lunch, which caused my whole brain to fall apart.

Sometimes I am just not particularly self aware. 

I got my period, which always leads to extreme fatigue. I usually watch sad movies and sleep a lot that week, but last week I stayed up every night watching teevee with Ian and generally enjoying time with my husband. Except, I wasn't really enjoying it because just below my breastbone was an ocean of tears I spent my time trying to suppress. All day and all night it was there, threatening but not breaking through because of course I've spent my whole life keeping that business contained which is why I watch sad movies.


So I was drinking Dr. Pepper every day at lunch, which doesn't make me energetic so much as it just makes it impossible to sleep before one in the morning. This doesn't get me enough sleep of course so I am tired all day. Which makes me reach for the Dr. Pepper at lunch, and then I am a really boring circular flow chart. Not the most clever I've ever been. Though, it does let me stay up watching teevee while enjoying my husband's company so there is that to be said for sleep deprivation.

I have hula class on Wednesdays, and I really do look forward to it all week long. I usually drag myself to hula on period weeks but I do drag myself there, knowing how much better I'll feel once it's over. But yesterday I nearly wept with exhaustion as I watched the clock get closer to leaving time. All I wanted to do was run away from home and maybe light myself on fire. I wandered around filled with the kind of self....not exactly loathing...but definitely disappointment that I hadn't had to battle in years. I was teetering on the edge of a major depressive episode and started wondering if the Cymbalta had stopped working, or if we needed to up my dosage. Or something. What in the hell was wrong with me?! And my depression answered "everything" because that's just how depression do.

Friends, it took me fucking up all through hula class to remind me about sleep and my need for it. I was such a mess on every dance, not knowing where to put my feet during songs I've known the steps to since before I even started taking lessons. (Iliana took lessons before I did so I already knew how to do the halau's main song from helping her practice.) I kept feeling, not ashamed exactly, but really really amused at my ineptitude. All I wanted was to crawl into a corner and close my eyes for just a second. Just one!

And it was like the slowest a-ha moment on the planet. I realized I hadn't really slept in over a week, and hadn't taken any of my period naps during the most fatigued part of my cycle. I was like, what to do what to do? And finally my partially awake brain screamed "DON'T DRINK THE FUCKING SODA AT LUNCH YOU DUMBASS" and I was like oooOOOooooooOOOooo because it really was a revelation. That is how not functional it is to ignore fatigue. 

So I came home after picking up Iliana from school and basically slept on the couch until Ian came home and made me eat a sandwich. Then I went back to sleep and slept some more until I had to take Iliana back to school this morning. And now I am still tired a bit (I would love to get another 3 hours in, tbh) but I no longer want to light myself on fire. I no longer feel desperate and my ocean of tears has dissipated. I feel like a totally ordinary tired human, instead of human garbage. 

Why, oh whyyyyyy  do I not remember sleep first off the bat when I'm on the edge? The world and I will never know, though I'm sure I'll have many more opportunities to enjoy this exactly revelation. Like maybe in a month, because I absolutely cannot be taught. And goddammit, caffeine free Dr. Pepper of the non-diet variety is kind of tough to get a hold of. What fucking baloney. 

Baloney, I fucking say.

Bodies, drugs, and poop.

 I am getting super frustrated with the weight thing because I feel like all I do is PT exercises and hula. I mean, obviously that is not all I do, but still. I am trying so hard to take care of my body but it's just not...manifesting. It's not that I want to lose weight or size exactly, but damn. Being middle aged plus disabled is tough goddamn shit. Do not recommend. 

And I am trying so hard! I have never been so in tune with my body as I am right now. Well, except for all those times I dropped acid and was in tune with all creation, but that only counts for so much. I mean, acid. 

I actually miss doing psychedelics. It felt like what I've read some folks feel when they're under a weighted blanket. I can recapture that feeling sometimes with meditation and blah blah blah but I am pulled out of it so easily. I did acid a lot when Dad was paralyzed and I think that helped me cope with the trauma of home. I was only fourteen or so when I was doing that shit and I was putting my altered self in some precarious situations, so it wasn't the best decision for me to make. But. Maybe it wasn't the worst either. 


Now the drugs I'm taking are all legal and boring and don't give me the same weighted blanket feeling. What they give me is a heap of gut issues which isn't helping my attitude any. Before gabapentin and cymbalta, taking my fantastic morning dump was the best thing I had going for me. Now I have to do stomach science all day long and I feel either queasy and gurgly or backed up and heavy. Or both on those extra special days. Fuck me.


on getting fatter

CN: disordered eating, weight (including actual numbers)

My pain doctor looked at my chart and mentioned that weight gain was a side effect of the gabapentin I'm taking for nerve pain.

"But considering the benefits," she said, "the weight gain is okay,"  I agreed with her immediately, of course. I mean, I'd do almost anything to be free of the pain that doesn't let me think about anything else except being in pain. This medication is revolutionary, to be sure. My life is so much the better for it.


But I've had a tricky relationship with my weight for as long as I can remember. When I was a single mom working for minimum wage at the laundry, money made me keep a close eye on how much I spent on food. Which meant keeping a close eye on what I ate, with different calculations for public and private eating. If I was with folks, I splurged on my fat and calorie content, then restricted when nobody was looking. I felt so fricking clever, of course. 

The laundry job also kept me incredibly active and my weight started to go down for the first time since high school. From a starting weight of about 150, I hit 117 pounds and gleefully wondered how much farther I could go. The bubbling desire to get under a hundred shocked me and I realized I had a problem. I looked at my kid and asked myself if I wanted to fricking die or if I wanted to be healthy for him. I thank my lucky stars that I was able to find a turning point there, instead of years later. Instead of never.

But the root cause of my desire to "see how far" I can drop my weight is always there. I've gained a lot of weight since then and I always have to let myself do it. Find a way to accept it. My therapist and I work on this a lot and I feel pretty good about my body. Mostly. Except I don't of course because I am always in pain and that makes me less active than I ought to be, especially now that I'm in my 40s. 

I walk, do my PT exercises, and practice my hula as much as I can. Then I have my classes on Wednesdays, which is usually about an hour of a half of sweating my freaking face off. But that's not enough right now, especially with the medication. And I have a super unhealthy relationship with the concept of dieting. First off, I just absolutely adore food. Adore eating. OMG if I could be eating all the time that would be heaven. 

But I can feel the weight on me. Being heavier does hurt more. After my tumor was removed I dropped a bunch of pounds and I just felt less pain, you know? I feel the physical pressure of my current weight and there is a difference. I know stabilizing my weight would help, but I am just ill-equipped to do so right now. 

I don't know how to manage my weight without going full on ED and restricting the shit out of caloric intake. I mean, maybe I do but every time I consider watching my diet or whatever, I...I don't even know how to describe it except to say that I wind up terrified. Every terrible brain monster comes out and it's horrible. The pressure to completely control my body is deafening. It's as loud as my never pain. Maybe louder?

Last night I weighed myself and the scale said 192.6. I am now heavier than I have been at any time in my life, including pregnancies. I am 5'8" and my comfortable weight of 165 is long gone. And I can't even believe that when I was 165 I was compelled to try for 140. That seems bananas. Just, like, absolutely bananas. I know it is. 

Like I said, my therapist and I have been talking about it and I know, I know, the first step is getting rid of my scale. Which, I haven't of course because how else can I weigh myself twice a day? What a conundrum. 

So here's the problem. I am gaining weight due to a medication I am taking to control my nerve pain and let me live a better life. My medication is making my latent eating disorder rear its ugly head and I need to add that to my list of things I need to address in order to be healthy. Man, having a body is insufferable work. Having a brain is even more difficult. 

I'm trying, you know? I really am. I mean, I'm not going to pretend that I don't carry some very predictable shame of being and becoming a fat lady but that's not all I've got going on. For starters, I logically am not opposed to being fat. My grandma was fat and she was the loveliest, cuddiest woman I've ever known. If I could be grandma-fat, I wouldn't mind. Except...

God damn. There is so much to unpack. And of course my therapist is on vacation, which is why I'm writing all of this here. Ugh.

And then the princess had storage space and lived happily every after

The 3-D walk-through of the house design was great and we forwarded docs to the contractor for pricing. He's super swamped like all contractors are around here these days so I don't know when we'll be able to get a meeting with him. He's fantastic though, and incredibly excited to work with us. His daughter is disabled and his family recently remodeled their hundred year old bungalow to make the main level accessible for her so his insight there has been remarkable. I feel lucky to have dropped into his project list. 

I am getting super excited about the new house and all the closets it will have. Right now we don't have any closets in this entire place, so my sister calls it my zero bedroom, one-and-three-quarters-bath bungalow. I mean, she's not wrong. There is nowhere to put anything really so all our shit just winds up everywhere and my house is always a disaster. I keep acquiring new storage furniture and trying to get organized, but nothing works well enough. Also, every single person in this house is guilty of "I'm just going to put this down in this random-ass place for right now, I'll put it away for real reals later" and it shows. We are nothing but random-ass shit in random-ass places and trying to tidy up just makes my brain short circuit. 

We're also beginning the purge process, which will definitely help with the shit being everywhere problem. I get so excited about every single bag or box of donate stuff we manage to get out the door. I put the shoes I wore to our wedding in the donate bin yesterday because I haven't worn the in a couple of years and they're just not comfortable enough. I'm hanging on to my wedding dress because Iliana might enjoy it at some point, but the shoes are just shoes. I'm trying to hang on to that mindset as I go through everything, but that's a constant struggle. Everything is so useful! And it might come in handy! Also, have you met books? And games?

I mean!

This is definitely a good, forward-thinking period right now. Not only is it spring looking forward to summer, but it's looking forward to the future of a house built to accommodate not only my schwannomatosis, but also my whole ass life. I mean, I just spent ten minutes looking at furniture to put in my front yard so we can have somewhere to retreat in the heat of summer when the backyard is an oven. I didn't buy anything because hi I have nowhere to store it and they're going to tear up everything in a year or whatever, but I started thinking about it. About the new house and the new life and the way I hope we get to live once all these shenanigans are over.

It's so nice to be thinking about this shit, instead of just grousing about how much I hurt and how much everything is trying to kill me. So. You know, things are pretty good right now. 


home and other adventures

Tomorrow morning Ian and I are going to our architect's office for a 3-D walk-through of the house design as we have it so far. This is the farthest we've gotten in the eight or so months that we've been working on the remodel. I love the basic layout and feel really hopeful that this plan might actually become our home.

We bought the house as a fixer-upper ten years ago and super stressful situations have been getting in the way of doing the fixing that needs to be done. And while it's been driving me up the lath-and-plaster walls to live in what I lovingly refer to as "a shithole", I have to admit that having put it off till now will actually work in our favor long term. Getting diagnosed has changed everything, so instead of doing just a plain old remodel we get the opportunity to focus on incorporating disability accessible designs too. It's a lot to think about. 

The one...not quite downside so much as but compromise, is that we wanted to keep as much of our back yard as possible but this design goes back far enough that we'll be hitting the maximum lot coverage allowed. We'll still be having twenty or thirty feet of back yard I think, which isn't nothing by any means, but it does change some things. I wanted a rain garden and fruit trees, plus enough room to keep the vegetable garden beds I ignore most of the year. And we can still do a lot back there, even with the restrictions on rain garden placement and all that, but still. Compromise. 

Anyway, I'm feeling darn pleased with the whole thing. I'm looking forward to the walk through tomorrow and to getting the quote from our contractor. I'm not looking forward to talking to the bank (eeek! money!) or moving the whole family (including PTSD Hurricane Katrina rescue cat, Yoshi) out while the whole remodel is happening, but hey. We're not there yet. All I'm doing right now is deciding if the images on a computer screen look good enough to get excited about. We'll leave the rest of it for future me to worry about. 


Pain, Pain, Go Away

When I went in for my one year post-op, my neurosurgeon finally got fed up enough with my whining to refer me to the UW Pain Clinic. My appointment was today and I'm glad I didn't listen to the little voice that told me the appointment would be useless so I should just cancel. The appointment was the opposite of useless and I am finally feeling some kind of hope about actual pain management in my future. The doctor was extremely frank, saying that while her clinic would never be able to completely resolve my pain symptoms due to my condition, the focus will be on getting me back to writing, since that is my main concern what with the nerve pain in my thumb and all.

She was extremely concerned about my posture and the overall tightness of my muscles. I am supposed to go back in about three weeks for some trigger point injections, and will be getting more referrals to other types of treatment. In the meantime, she said to really work on getting my shoulders back and down since I guess I am trying to touch them to my nose or something. Just pressing my shoulders back into my chair here and trying to get my shoulder blades together has already proven helpful with the typing. I can feel the nerve pain in my thumb, but it's not nearly as bad as usual. I'm not having to ignore or disassociate in order to get my thoughts down. So, that's huge.

In the beginning of my appointment she said that she was reading all the notes from my other doctors and said that I'm "famous" in my chart. What a weird thing to say, right? At first I assumed it was just filled with a thousand different ways for doctors to call me a hypochondriac, but maybe it's just because I have this super weird condition. 

Also, she said I got "all the points" indicating PTSD on their pain tracker app. It totally caught me off guard because while yes to the PTSD stuff, I wasn't expecting it to be brought up quite so...easily? Offhandedly? I dunno. Anyway, she was interested in those results as well since trauma will definitely affect the way we treat my pain. 

In any case, I'm super hopeful. Like, super hopeful. I liked the clinic a lot, it's easy for me to get to even on the bus, and they are part of UW, which means they're connected to all my other doctors. There is also a chronic pain support group run by the clinic social worker, and I'm thinking about checking it out at least once. 

We'll see what happens.


Well, back to actual life, whatever that means

Today is my lax day, when I don't have any appointments or classes and I am left to my own devices for a few solid hours. The rest of this week is especially busy so I'm trying to make it count. It still feels goofy to say things like that since when I actually look at my calendar so much of my schedule seems leisurely. 

Tomorrow I walk Greenlake with a friend, then I have a float tank session, then I have Physical Therapy. Of all of those, only PT sounds like a "real" appointment, but the other two are actually part of managing my condition so if I skip them, PT is extra garbage. Ex-traaaaaaa.

Wednesday is hula, which is two hours since I go early for extra help and the one hour class always runs long. Two hours of hula is tough, you guys. The instructor may call a Ki'i Wawae an "enter" (wtf) but she still makes you do them. I leave straight from there to pick up Iliana since every Wednesday is early dismissal. Every Wednesday. (Also wtf) Wednesday evenings I go to Aqua Fit with my sister and we sweat in a pool with other hobbling women who are doing our darndest to maintain functional fitness. 

Thursday is acupuncture and therapy which is plenty after the bigness of Wednesday. I used to walk Greenlake on Thursdays, too, and I need to start that back up again but I haven't been able to make it work for a few months.

Friday is another lax day so I added a float tank session. It is literally relaxing and all, but it's still an appointment to remember. And then this week I have a haircut (finally!) plus an appointment at the UW Pain Clinic, which I'm skeptical about. I'll report back on that next week or whatever.

Between all that I try to practice my hula every day (except Wednesdays omg) for an hour. Or, well, I was doing an hour before my surgery and I'm trying to build back up to that but I haven't broken the twenty minute mark yet. I also try to do at least some of my PT exercises. I was doing an hour of PT a day but since I picked up the hula I've all but dropped that. I need to pick that up again because otherwise, wtf is the point of PT. 

I need to start getting massages regularly, which sounds lovely in my head, but is actually kind of a nightmare. The schwannomatosis makes my muscles so tight all the time so I need those massages where they basically beat you and you wait for the sweet release of death, and then maybe three days later you feel better. And there are so many raw nerve spots on my body so when a massage therapist digs in there...well. It's not relaxing that's for sure. 


I am so consumed by managing my pain that there is little time for anything else. I mean, sure, I'm still doing familial responsibility shit, but I can't do most chores for very long before my hand turns murderous. I do what I can every day, but of course it's not a lot. So mostly I vacuum the spot where I'm going to do hula or whatever, and ignore everything else. It's one way to approach this, I guess.

I felt like I could do more in Hawai'i, but of course that's not true. We had housekeeping come every day which made the living situation seem far less bleak. Less disabled and dirty. I mean, I did do a lot in Hawai'i, but I didn't have to come home to a totally neglected house after it all so I felt lighter, Well, that and the joy of being with my family. Plus the copious amounts of vitamin D my body has had to do without for these past decades. That all helped. And now, back to none of that. 

Okay I'm going to practice my hula now. Tell me what's going on with you.

Indigenous Disapora Something Something Feelings Are Hard

 Ugh I'm always so depressed when I come back to Seattle after a trip back home. I'm especially feeling it today since I'm headed out for hula in a little bit and the lessons I'm taking here aren't nearly as good as the single lesson I took at the hotel condos where we stayed. My instructor (she's not a kumu hula because that's a specific training and passing of the torch) doesn't even know the proper names of some of the steps. I adore her and her family, plus it's nice to only go to Magnolia for lessons rather than driving much farther to one of the more "legit" halau, but  I keenly feel how much I'm making do here rather than immersing myself in my culture like I need. 

Whenever I talk about being homesick this much people invariably urge me to move back home. And that's great and all, but it's really not helpful. I mean, I do know about this thing called moving. I have thought about it. It's pretty much all my sister and I talk about, and we talk every day. It's just not happening right now for a lot of reasons. I have a lot of feelings about that. And I know people are just trying to be helpful but sometimes people are sad and in ways that are unfixable, at least immediately. And telling me to move back home whenever I'm sad about not living back home just makes me feel like I'm being told to shut up. And if you want me to shut up about it, you're just going to have to find your own ways to not listen. I ain't shutting up. Damn.

Sometimes people ask why I can't move home and I can never tell how much they're actually asking. I mean, it's a long fucking list friend, how much time do you have? And every bullet point on that list is a long-ass story, so. Buckle in if you really want to know. Otherwise, just trust that moving back home isn't in the cards for me today, and today I am really fucking sad about that. 

Also, it's funny how many people remark that they just don't relate to my gut-wrenching sorrow that I'm not back home. They say they don't have that same kind of relationship to any place, blah blah blah. And I'm like, yes, settler, I know. You don't have the concept of homeland the same way I do. Good talk. Which, I told Ian that the other day when he said that shit to me and he started to get offended I think. And I had to tell him look, settler isn't a judgement for crissakes. It's an acknowledgement. Now, can you please acknowledge that being Native Hawaiian raised in a Hawaiian family but now living away from Hawai'i and  my people might come with a profound sense of loss? Being indigenous doesn't make me a better person, it just is the way I am a person. Like, damn. It's not that difficult. Or, maybe it is. I dunno.

I mean, I do get that it can be difficult. Jonas' girlfriend is Cowichan so while we're not precisely living in her homeland, her people are up here. She goes to her powwows and has deep connections to the region. She is also one of those people who, being well adapted to the PNW, wears fricking shorts all year long even when I'm cursing February's very name and wanting to burn my house down just for the warmth. Damn. Summers here are brutal for her in the way that the entire rest of the year is brutal for me and my sister. Anyway, Jonas is always lamenting that she won't ever move back to Hawai'i with him because she literally cannot handle the heat and I told him, yeah, that is how it's going to be. If you and Baby Girl are going to be together, long term, part of your relationship is going to mean either one of you or both of you dealing with homesickness. Move her to Hawai'i, not just away from her land but from her people, and she's going to feel it, in her bones. Stay here and never move back, and you're going to continue wanting to die a little bit every day. Okay so that's me projecting but he knew what I meant. 

I told him that even if you split your time between the two - which, good luck figuring out those finances and I mean that sincerely because maybe you could then teach me how to do it - somebody's always going to be away. And it doesn't matter that Jonas has lived his whole life in Washington State. When he goes back to Hawai'i, he feels that visceral connection to home that he just doesn't have in Seattle. "I feel like I make more sense here," he tells me every time we're back and I'm like I know, I know Boy-san. That's how it feels to be around your people. It fills your soul the way nothing else can.

It really sucks to lose that. The end.


Win some, lose some

 Well at least my uvula is better. The weird gray dangly bit hanging from it has vanished and I don't feel like I have strings in my throat anymore. Unfortunately I was wrong about that being the cause of my nausea. Ugh barf why are gag reflexes? 

I'm going through opiate...withdrawals (?) while I am still getting accustomed to gabapentin, so I guess it's no wonder that my head feels like a helium balloon these past few days. My CBD oil tincture seems to be helping even that out a bit, which has me pretty angry. There was a moment yesterday when I considered taking another oxy because I was so miserable, though not in any surgical pain that hadn't already been resolved by acetaminophen. Then I realized I was miserable because I was off the oxy and this is how pain patients become prescription drug abusers. I'm lucky in that CBD oil works for me and I have like one of the best support systems in the world. And, for whatever lottery I did actually win, I'm just not super predisposed to addiction.

Having done a lot (a la-ha-hot) of drugs in the past and seen drug buddies become quickly dependent while I just picked it up and put it down like it was no big deal, well. I know there is no moral or conscious or good goddamn reason why I never became a meth addict, for just one example. There is no reason for me to not be an oxy addict right this very second, except perhaps luck. I mean, I'll take all the luck I can get because my luck also gave me schwannomas where most of the population doesn't even have to know how to pronounce that word. But. It makes me mad that I was sent home with an addictive pain medication and the pamphlet warning of the possibility of addition clearly states that the only sure way to not become addicted to these necessary medications is to not use them. Which is just a motherfucking a bald-faced lie.

Surely there is a way to give patients tools to deal with this horrible withdrawl-y part of the recovery process. Instead of telling me to not use the medication I need immediately following surgery, maybe give me honest information about how awful coming off the dope is. Tell me I'm not making it up and that it does feel as horrible as I think it feels. Help me recover from surgery recovery. But no. Let's give patients, some with very little experience with narcotics, the idea that if their bodies get addicted it's their own fault for using the meds in the first place. Damn, son. I'm sorry I had surgery that required narcotic medications. How foolish of me.

Anyway, thinking about the so-called opioid crisis obviously, and being angry. Thinking about health care's shortcomings and being angry. Thinking about the humans like my wonderful nurses who are trying so hard to work miracles with the shit system they've inherited and being angry. We can take care of each other better than this. I mean, goddamn.

But hey. At least my uvula is better.