You're Not Fully McLean

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.

Anyway.

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.

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.

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.

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. 

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. 

Anyway. 

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.

 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.

Had my gallbladder taken out on Sunday, the same day we had scheduled iliana's birthday party. I stayed in the hospital asking for more morphine, while Ian wrangled 20-something first graders at the Children's Museum. I feel like I got the better end of the deal on that one.

Now I'm home I'm just trying to keep ahead of the pain. And this is way more painful than when I had my tumor removed last year. I mean, that's to be expected since they inflated my entire abdomen and all my core muscles are basically screaming fuck you! But it's still funny that getting my gallbladder removed hurts more than having a nerve sheath tumor removed. I dunno.

Anyway I'm supposed to take a lot of pills. I have my regular medication that I'm on but now with all of the extra shit... Holy crap. You don't have to worry about me drinking enough water right now it's cuz I need to drink so much of it just to get these ten thousand pills down. Also taking gabapentin and Oxycodone, both which cause drowsiness is... Well we know what I'll be doing today.

Anyway there's my report. I am down one gallbladder since we last talked, and up four prescriptions. How are you?


Sent via the Samsung Galaxy S® 6, an AT&T 4G LTE smartphone

Added my second (morning) dose of gabapentin today. I started on one nighttime dose on Monday and that seemed helpful with the nerve pain in my hand, though the grogginess was definitely a force to be reckoned with. I try to go to Summer's house on Fridays so we can do our physical therapy exercises together (solidarity in suffering!) but I am staying put today. Driving is a no-go with this brain fog, and I don't feel like waiting at the bus stop in this rain. At least, I'm letting the rain be my excuse for today.

I had some acupuncture done yesterday. It was fine, but I'm not sure the practitioner was the right fit for me. I'm going to give her a few more tries to make sure, though. My insurance covers sixteen visits a year so I figure I can see four different people four times each in hopes of finding the just right person to stab me all over my body. Pain management is so weird sometimes.