2 weeks post top surgery

Content Note:  vanity.

When I first saw my chest, looking down while everything was being unwrapped, I was pretty happy.  Everything looked good, except for the fact that the left side was larger than the right.  I was assured it was due to swelling, and everything would even out.

Now that another week has passed though, I’m not feeling it.  I am more and more skeptical that there is much, if any, swelling going on.  My spouse agrees.  Regardless, I’ve been taking arnica and bromelain… using ice packs a little bit.

Right now, there is not enough symmetry, in multiple regards.  The areolas are different shapes, and they are too large (not “nickle sized,” like we discussed).  The nipples are also too large, but it’s kinda hard to tell what’s going on there (they’re currently being smooshed flat, and will continue to be for another 2 weeks.)  The biggest thing, though, is, I have different sizes going on, which contributes to the areolas/nipples being not in the same place, on each side.  I don’t like that!

All these differences are fairly subtle, but definitely noticeable.  I know it’s way too early to be coming to conclusions about how things look, but, so far, not so good.

I’ve been in a pretty negative space.  I’ve felt so negative at times, in fact, that it was hard to feel motivated to do all the showering and “nipple care” stuff.  This has gotten better over time.  Everything could change a lot, as I heal; I do recognize that.  It’s not all bad.  Every time I have the sterile pads and binder off for a little while (to let things air out), and I put on a t-shirt (carefully!), I think, “This could work!”  Excitement is there, somewhere.  Sometimes I push down the good stuff, and remain guarded and reserved.

There is something here though:  When picking a surgeon, I wasn’t going off of a whole lot.  I mean, I pored through what was available on transbucket, for sure, and searched resources, youtube, and the like.  But I didn’t really entertain all the possibilities very much, in my head.  I had a gut feeling about one route, and kind of just stuck with that.

This isn’t the first time I’ve made huge, life-changing decisions in this manner.  But I kind of hope it might be the last time.  (I know it won’t be, haha.)  There are better ways to go about narrowing down all the options!

There is one resource that I just learned about a couple of days ago, because a fellow blogger pointed the way.  Gabriel wrote a post called Getting Started With Top Surgery.  He mentioned “top surgery Facebook groups where people share their results and stories with their surgeon as well as the price quotes they’ve paid.”  Oh yeah!  Facebook.  That had not even crossed my mind, unfortunately.  So I just joined an FTM top surgery group, and wow, this is where all the good stuff is.  Wish I had known about it 6 months ago.

Edit:  My spouse suggested I stop looking at the FTM top surgery page for a while.  That sounds like a good idea – I was starting to get obsessive about it.  She said wordpress is good.  Stop going on facebook.  Haha.  I agree.

I feel torn about whether I will post pictures or not, and if so, where.  Before surgery, I was sure I would not post pictures on this blog, but I would post them on transbucket, when I feel ready.  (They can be accessed if you create an account on transbucket).  This still sounds like what I’m going to want to do.  I do not plan on ever being shirtless in public.  So, in regards to aesthetics, the most important thing is how everything looks while wearing a t-shirt.  Other than people looking up pics as a resource, the only people who are going to see my chest are my spouse and me (and medical professionals, when necessary).  So is it important what it looks like?  Ultimately, yes.  But for right now, as long as I can wear whatever I want, I will be happy enough…

During my most recent therapy appointment, right before surgery, I had said, “I’m worried my chest won’t look as good as it does now.”  As opposed to saying, “I’m worried my chest won’t look as good as I envision.”  That, to me, says a lot.

In other news, I had a great time in Philadelphia with my mom, after my follow-up.  We went to a brewery and record store.  We met up with friends at the Philadelphia Trans-Health Conference and went to two workshops.  Wish we could have stayed longer!

Also, my spouse and I went to a wedding this past weekend, and it was a lot of fun!  Their ceremony reflected who they are, a lot, and everything was casual and laid back.  After the ceremony, I was asked to sign the marriage certificate, as one of the witnesses.  This was a total surprise!  I felt honored.  I asked the officiant if it had to be my legal name, and she said it didn’t matter.  Awesome!


6 days post top surgery

Going into surgery, I was in pretty rough shape.  I felt sick (although I didn’t want to say so, specifically, to anyone other than my spouse… I kept saying “slight head cold”) and exhausted.  Luckily, my cold symptoms were not too worrisome, medically:  no fever, no chest congestion / trouble breathing.  Other than the cold, I felt mentally prepared.  In retrospect, I totally was. But, not so much prepared for the recovery process…

office / home / guest rooms mansion

office/home/guest rooms mansion

Surgery Day:  We arrived at 6:15am, surgery was from 7:30-9am, I was sleeping till about 10:30, and we were leaving by 11:30.  At which point, I felt a lot better than I had for days – it even felt like my cold magically disappeared.

Everything went smoothly, except for the fact that the surgeon was about to do the wrong procedure.  I was afraid this was the case because during the entire process including the consultation, the paperwork continually listed “double incision mastectomy with free nipple grafts.”  Even after I called a month ago to verify we were on the same page with the peri-areolar procedure and was assured that we were.  So when she came in and said, “Double incision.”  I said no, and luckily wasn’t phased by the mix up.   She said peri-areolar, I said yes, and she drew circles around my areolas.  I talked to her about nipple size, saying I wanted them small.  She said, “They’ll be smaller.  Your nipples will be nipple-sized.”  That was not very reassuring, but after she left, and before the anesthesiologist came back around, my spouse clarified that she had said, “your nipples will be nickle-sized.”  That sounded better.

If you want to read a more detailed account of what it’s like, here’s a good one someone wrote just a few days ago:  Surgery.  It was a lot like that. Back at the guest room, we texted with some people, a Philly friend came and visited for a while, we watched Seinfeld, and we went to sleep early.  I was up a lot that night, ravenously eating snacks and just not able to get comfortable.  I was sleeping sitting up, at the foot of the bed, a lot.

Day after surgery – The next day, we were driving home.  And I was in bed by 6pm.  My cold symptoms were back, and I was not feeling so good anymore.  I’ll bet that first day, I had a good mix of adrenaline and endorphins flowing, plus whatever they put in the IV.  And then I crash.

2 days after surgery – I sat outside for a while.  A friend came over, and we chatted for about 30 minutes before my spouse and they went thrift shopping.  We listened to some podcasts.  I read a book about subway art, written in 1984, a book I had found in the trash at school.  We watched 2 episodes of Mad Men.

drinking water

Drinking water.  Feeling pretty good.

drinking water. I did not plan on wearing this Hawaiian shirt. Turns out I don't have that many short sleeved button down shirts that will comfortably fit over the drains I have in!

Drinking water. (I did not plan on wearing this Hawaiian shirt. Turns out I don’t have that many short sleeved button down shirts that will comfortably fit over the drains!)

 

 

 

 

 

 

 

 

 

 

 

3 days – Podcasts, Mad Men.  I stopped taking the pain meds (Percocet) because they were causing OIC (opioid induced constipation).  The pain increased throughout the day, but it’s not like Percocet was all that effective anyway.  We went to my spouse’s parents’ house, which did not go so well (I could not bear being social, especially once a family friend came by – I just went and sat outside.)  We went to the grocery store on the way home – that was OK.

4 days – Glad to be off Percocet – realized that there are other pain meds (D’uh!) so I took an Alieve.  I feel like 95% of the pain now is due to this fucking surgical wrap I have to wear for 7 days.  I can only take shallow breaths; I can’t laugh or yawn or cough; it’s digging into my ribs and underarms; it’s way too tight; it just fucking sucks*.  There’s a reason I didn’t bind!  We went to the movies – nice to get out of the house.  Also, one of our cats got suddenly freaked out by my Frankenstein walk (even though I’ve been doing it for days), and she bolted off the table, knocking a bunch of my records onto the floor.  It was loud.  Also, I had a mini melt down about hating asking for things that are so basic, telling my spouse that I keep doing things because I would rather do them than ask – open and close doors, get ice trays out of the freezer, pour water from our britta, reach up high for a Q-tip, carry my laptop…  I gotta stop so I don’t mess up my healing process!  She was on it and strategized a bunch of new ways to make things easier!

5 days – My spouse went back to work.  Our refrigerator was making a loud noise this morning and stopped working.  That was stressful!  I called a repair person, then changed my mind because we should just buy a new one because this thing is super old.  My spouse’s mom came over to save our freezer items for us, store them at her house.  Then the fridge started working again, so it feels like less pressure – we’ll still get a new one, but it doesn’t have to be today.  A friend brought over lunch – I liked that!  My mom stopped by after work.  I felt anxious and lightheaded for a lot of the day.  I was feeling really confined/claustrophobic, as if this binding thing were made of plaster of paris, or steel.  I had a serious melt down (I got an all-too-real glimpse of what it could feel like, if I lost it right now – I felt in danger of becoming more and more triggered), and told my spouse we need more people around us, helping.  She called her parents to make that happen.  We talked and I felt a lot better.

6 days – That’s today!  I only managed to sleep 3 hrs.  I’ll be spending more time with people today.  I’m just going to try to relax.  I also gotta start preparing for going back down there tomorrow, to get this fucking binding off.  Oh, and the drains.  I’m going with my mom.

Overall, I’m in more pain than I thought.  And I’m way less out of it than I thought (like, I didn’t get to be in a fun pain-killer induced haze, haha).  And I don’t like TV that much and I’ve been up and about a lot.  I hate not doing things because it reminds me of being depressed.

*  Note:  this may be the only time I’ve used swear words on this blog (in reference to the surgical binding).  It’s that bad.  Also, though, I appreciate this thing because it reminds me of where the limits are and also it’s preventing me from coughing stitches open or anything like that.


1 week till top surgery

One week feels about right – it neither feels like it’s approaching too quickly nor like it cannot come soon enough.  I already have everything that the surgeon’s office needs turned in; my to-do list now consists of things I’m trying to think I want to get done before I won’t be able to do stuff for a while:  cut my hair, cut my spouse’s hair, cut the grass, purchase extra cat litter because I won’t be able to lift that, do laundry, install the air conditioning unit in our bedroom window…  I know my spouse can do a lot of this stuff as it needs to get done, but I guess it feels good to be getting as much out of the way now, while I can.  I do not look forward to not being able to do things.  I’m going to have to accept it.

I’m also thinking about what, specifically, I will miss.  I’m going to take some pictures, but, what’s impossible to capture is how that part of my body feels – both the shape and the sensations.  I’m resigned to the fact that I will most likely lose sensitivity in this area, and I wish I could remember it how it is, somehow…

Last Saturday night, my spouse and I went with friends to see The Man Who Fell to Earth.  Without giving any spoilers, there was a scene in which David Bowie’s character is undergoing surgery while conscious.  Doctors are cutting into his areola with a scalpel, and he is yelling for help.  This was like whoa.  Unexpected.  Hitting a little too close to home.  Not making sense, story arc wise (the story arc was less of an arc and more of a jagged pattern-less wave anyway).

I do this sometimes, but I don't have the close-up face mirror. And I don't tweak my nipples - I cover the whole area with my hands.

David Bowie film still from The Man Who Fell to Earth. // I do this sometimes, but I don’t have that close-up face mirror. And I don’t tweak my nipples – I cover the whole area with my hands.

I don’t really feel anxious or excited, at least not yet.  I’d be into the idea of getting through this without either or those emotions – we’ll see.  It helps to read other accounts of impending surgery thoughts and feelings.  Such as this post:  Last Minute Concerns, from over 5 years ago.  And recountings of the process, such as this post, from yesterday:  It’s Never Too Late.

I only have 3 more days of work.  Then I won’t be back till probably August.  That’ll be weird.  I wonder what my days will look like, once I’m recovered enough.  Will I feel like being creative and getting stuff done, or will I end up just hanging out?  We’ll see – I’m not going to make it be anything in particular.

Other stuff has been going on too.  My spouse and I visited some extended family on my dad’s side last weekend, most of whom she had not yet met.  I sent an email to as many people as I could in advance just mentioning my name change and that I go by male pronouns.  I received only one reply, and my expectations were pretty low.  Surprisingly though, everyone who said my name used my new name, and there were zero slip ups.  It was awesome.  I think this’ll help my dad get on board!  (He is getting there, slowly…   …   very slowly…)


4 weeks till top surgery

About 10 days ago, my breast tissue started to feel inflamed and tender.  It wasn’t in line with my menstrual cycle, and it hurt way more than that would, anyway.  As it got worse and not better, I wondered if it was some strange manifestation of a psychological reaction to my upcoming surgery.  I wasn’t feeling stressed or anxious about it, but was this psychosomatic?  Then a patch of skin below my left armpit started to really burn and sting, as well as the skin around my shoulder blade.

Then 3 days ago, I broke out into a rash in those areas… and my boooobs still hurt a lot.  I was able to get in to see my doctor yesterday, and… it’s shingles.  She said that would also be causing the breast tenderness, because of where it is.  Shingles flare up along a line of nerves starting at your spinal cord, and wrapping around to the front of your body – so that you only get it on one side, within a range of area.  It’s like chicken pox, redux.  Everyone I’ve mentioned this to says, “You’re too young to get shingles!”  All I know about it really is that Carrie Brownstein got shingles while on tour (from reading her memoir, Hunger Makes Me A Modern Girl,) so I guess I’m in good company.

I got 2 prescriptions to help with the pain and the duration.  We’ll see – it should start clearing up within a week…  I’ll be going back in 2 weeks for my doctor to take a look.  If this had happened close enough to my surgery, it would have had to have been postponed.  That would have made me really upset!  According to this timeline, I should be OK.  It’s just so mind bogglingly coincidental that this suuuper painful inflamation occurred right in the area I’ll be having surgery. I’ll let you know which ends up being more painful – this or surgery!

Other than that, I feel relatively prepared.  I just had my pre-op appointment via phone call a week ago, and that has put things into motion for getting everything ready.  I got a huge packet in the mail of things to sign (informed consent), directions for when to do what, etc.  I made a checklist to make it easier.

Pay surgeon – I still have to do this.  I exhausted all info about my insurance plan, and there is no way insurance would pay for any of it.  I expected as much all along, so, no big blow there…

Get parking permit – In process.  My spouse and I will be in Ardmore, PA for close to 48 hours, and we need a temporary parking permit to park in the municipal lots.

Get therapist letter – In process.  My therapist just sent me her draft last night, and it looked good to me, so she should be faxing it at some point today.

Get prescriptions filled – Done.  This could be done well in advance, so your meds are ready for you when you need them.  I needed to get a pain med and an antibiotic.

Get lab work – Done.  I did it yesterday  morning.

Go through a pre-op appt. with primary care physician – Done.  I did it yesterday morning.  I killed 2 birds with one stone – this plus shingles diagnosis all in one.  She will be filling out a form to clear me, despite the shingles, and faxing it in.

Send in consent forms and everything else that needs a signature by me – I gotta get this together.  I think I need to re-print certain pages and figure out what I still need to read through.

Take photos of chest – I did this for the surgeon already, but I might want to re-do it.  Not while I have these shingles though!

I feel ready for surgery, mentally.  Emotionally, I’m wondering if something is going on (shingles are brought on by stress, which I’m not actually feeling).  I set up an appointment to see my therapist (who I haven’t been seeing lately), just to cover all my bases.  It can’t hurt!


That specific trauma is no longer a big deal

Around this time, 16 years ago, I voluntarily admitted myself to a psychiatric unit, but then I got stuck there for 19 days without knowing what was going on.  The lack of communication was horrendous.  I suffered a psychotic break and left with a diagnosis of bipolar disorder.  I accepted this for years, and I internalized that I have a mental illness in some pretty detrimental ways.  This has always stayed with me, always felt like something I needed to work through and get past.

Two years ago, I wrote about how I came to finally acquire my medical records from my hospital stay, and how I started to process things differently with the help of my therapist:
Continuing to work through a specific trauma

Last year, I wrote about finally bringing that record into therapy and how it felt to have her go through it.  I was starting to realize that maybe I didn’t need to pick it all apart; maybe my perspective was shifting naturally, over time.
That specific trauma is still there

This year, although I’m acknowledging the anniversary, it feels like just the slightest emotional blip on my radar.  I talked about it in therapy yesterday.  I finally got my hospital records back from my therapist (she had been holding onto them for me for a whole year!)  I looked through them again last night – there was always one page I skipped over.  It was handwritten by me, explaining what had been going on in my social life that led me to feel like I needed to be hospitalized.  I read it and felt OK about it.

Although this seems counter-intuitive, I think it helps that I was hospitalized in January.  Where everything went wrong the first time around, everything went right(?) (maybe not right, but it went smoothly) this time around.  I can overlay this experience on top of my shitty traumatic experience, and things make more sense.

I resisted the diagnosis of bipolar disorder for a long time,  I’d been off all meds for 9 years; I felt relatively stable.  When it was re-affirmed that I have bipolar disorder by the psychiatrist I was assigned, (“Once a bipolar, always a bipolar.”) I bristled at that.  Actually, I bristled at him in general every step of the way.  Appointments with him lasted a mere 2 minutes.  He was inflexible and adamant I stay on meds forever.  He forgot pertinent information about me.  (At one point he told me I needed to stay on meds because I had been hearing voices.)  After 6 months, I just stopped making appointments with him.  With all his intensity toward me staying on meds, it was surprising how easily he let me just get away.  Maybe he didn’t even notice I left.

My therapist helped me find a new psychiatrist; she’s awesome!  She’s willing to follow my lead on what I want to do about drugs, and she’s willing to dialogue with me instead of ordering me what to do.  I still don’t know what to do about drugs, but at least I have the space to feel supported with whatever I do choose to do.  For now, I’m staying on them, but I can’t pinpoint why.

I respect this new psychiatrist.  When she (also) told me I fit the criteria for bipolar type I, for the first time in a very long time, I felt like I could accept that.  I don’t need to incorporate that in any particular way into my identity; it doesn’t need to mean I view myself differently.  Personally, it’s not a core part of who I am.  It just is an aspect of me that can just be, and I can leave it at that.

And I can finally integrate the difficult journey toward mental health as parts of myself, rather than things that happened to me.


Thoughts and feelings just passing through

Yesterday was World Suicide Prevention Day.  I didn’t know this till today, but looking back on yesterday, unknowingly, I was thinking a lot about the idea of suicide – something I don’t think a lot about.  It’s been an annual day on September 10, since 2003; this year’s theme is Preventing Suicide: Reaching Out and Saving Lives.

I’ve been thinking about this book that Kate Bornstein wrote called, Hello Cruel World: 101 Alternatives to Suicide for Teens, Freaks, and Other Outlaws.  I haven’t read this book in its entirety, but the gist is that there are so many things you can do other than suicide – some of them might be extreme, some might be unhealthy, some might be even self-destructive.  But if it gets you through the moment, and you’re still here, that is good enough for the the time being.  I think that’s a great message.  Sometimes when someone is in so much psychological pain, nothing sounds appealing.  But if you just try something different, something way out there, it might be enough to even just temporarily jump-start you out of the mode you’re in.

When I was in high school, one day I heard an after-school announcement for a “yellow ribbon club.”  I really wasn’t doing well, and I decided to see what it was about.  It was run by school psychologists, and there were maybe 5 students who showed up.  We went around the room stating why we came.  I basically said I came because I was worried I might attempt suicide; I came to get help.  The other students had come for other reasons – either they had been affected by the suicide of someone they knew, or they just wanted to help.  After I said why I was here, one of the psychologists reiterated what I had said.  I remember feeling embarrassed and selfish.  I didn’t go back to any more meetings.  No one ever followed up with me.  I did not end up attempting suicide, but things did get worse, and I ended up in the hospital not that much later on.  I partially blame the psychologists for never checking back in with me.

This is a hard post to write because suicide is such a loaded subject.  I’ve never attempted suicide or had an actual plan or had serious suicidal ideations.  But there’s another way to feel suicidal – just kind of vaguely feeling like you cannot go on.  Like you cannot keep living your life.  Like you want to just stop existing, or just sleep forever.  I’ve definitely felt that.  With all the rough mental health – related stuff I’ve been through lately, I’ve felt that even recently.  It’s a dull, nebulous, insidious, recurring, empty heavy veil, a lens to see the world through – a hindrance for sure, because there’s not much to be able to see, through all those layers.  I don’t really know how to address it, other than to hope it will pass.

I think that what I’m learning is that rather than fighting those types of thoughts and feelings or trying to distract or re-route, it is possible to just give them less emphasis, to live with them, and to just focus on doing what you want to do, despite them.  Just let them cycle through your brain, acknowledge them, but don’t give them any more power than what they are – just thoughts and feelings that come and go…

Kinda easier said than done, but I am trying to adopt this practice…


The implications of “back to school”*

*Back to school is in quotations because as a janitor, I didn’t actually leave school.  We’re just gearing up for everyone else coming back.

I spent this summer waking up at 5:20AM every day, working to get the school ready for students and teachers.  We are winding down from that (we’ve been wound down for a while – we started out really fast and got done early).  I’m back to late nights (2-10:30PM) without much to do other than dump the trash of the few teachers who have been coming in to set up every day.  It’s been nice that the cleanliness of the school is at a standstill.  We can just look around and say, “we got all that done.”  And we don’t yet have to work to maintain it.  Kids start back on Wednesday, so that will all change in a couple days.

While we were busy though, we were rushing through things.  We scrubbed every desk and chair.  We cleaned surfaces in the rooms, shined the sinks, dusted.  We scrubbed the old wax up off the floors.  I single-handedly waxed every floor.  3 times over.  I’d like to know how many square feet that was.  Tens of thousands?  Maybe even a hundred thousand?  Or a lot more?

It has been a relief to drop back to the later shift and not feel like I’m stumbling, half-awake, in the mornings, just to come home and start dreading about waking up early again.  I had been going to bed at 8:30PM!  My mental health has been better overall, but not great.  I’ve been mildly depressed all summer.

Going back to late nights has been lonely, and strangely, a lot of my worries have centered around what to eat before work.  I need to fit in breakfast and lunch.  I don’t know what to eat.  I also don’t really know what to do, all by myself, other than oversleeping.  I’m forcing myself to do some things I don’t really feel like doing, as of now.  I guess the hope is I will grow into it; I will like it once I’m doing it.  I’m going to be a radio DJ starting pretty soon.  I’m also going to take a writing class.

I’ve been realizing that I’m living with a lot of dread lately.  Whether that’s residual from mental health issues earlier in the year, or whether that’s just me being me, I can’t really figure out.  It’s been helpful to notice it while it’s happening though, and just focus on the here-and-now.  Remind myself that I’m actually fine in whatever I am doing presently, so just be more involved in that, rather than thinking about all the perceived horribleness ahead.

For example, I’m dreading going back to doing the exact same thing, at work, every day.  But, it really is what I make it, from moment to moment.  Unlike most jobs, I don’t have unpredictable things pop up daily, or new challenges to tackle, or people to deal with.  It’s just me, in my head.  I need to remember that it’s important to change what’s on my iPod frequently – new music, new podcasts…  And to talk to people on the phone.  And although I don’t believe her, my therapist keeps telling me that I’m actually in control of my own thoughts.  So I can choose to keep obsessing about something negative, or I can move on to more interesting topics.  In my mind, I am powerless to whatever my brain ends up dwelling on, and I get stuck feeling whatever feelings those thoughts conjure up.  I should work on that…


Camping trip during Christmas in July

This post has nothing to do with being queer and trans; it’s not about janitors or mental health.  I think I need a short break from that stuff…

My partner and I went camping this past weekend, and it was exactly the sort of thing I needed.  Things had been feeling heavily monotonous and mundane, even on weekends.  I hadn’t been getting much enjoyment out of things that are usually fun.

Leading up to going away, I had an anxiety meltdown about it – about all the planning and packing.  Mostly, it was about the prospect of being away all weekend and not having enough time to regroup for the work week.  It didn’t occur to me that being away could be rejuvenating in a way that doing things at home, worrying about work and mentally preparing for work, never could.  Huh!

We left Friday right after work and drove for about 2 hours to our destination.  We stopped at a farm stand along the way to buy firewood, and we got some golden plums too.  We had wanted to camp at a state park, but all the ones near where we were headed were booked up already, so we had to resort ahead of time to a privately owned “campground.”  It was actually an RV park with over 150 trailer sites and only 9 tent sites.  Everyone was right on top of each other.  Quite a few were blasting country music or classic rock music, and people were rowdy with the fires and the drinking till late into the night.  We got the sense that some of these people had been there a while, and a lot of them seemed to know each other.  (Other than the noise and the overcrowding), we had a great time!  We didn’t spend all that much time at the site anyway – basically just making a fire both nights, making food over the fire, drinking some beers, and sleeping.

During the day, we did a bunch of stuff at the nearby town.  We went to the very impressive (and very busy) local farmers’ market, then went to a craft supply store and a book store and a clothing store.  For lunch we went to a (also very busy) brewery, where they had beet greens on their pizza and salads made of baby kale, tat soi, beets, candied peanuts, and grilled blackened tofu.  Yum.  We then went for a hike on a gorge trail and waded in the cold creek.

Back at the campsite, it was Christmas in July (7/25).  Some trailers had gone all out with the decorations – it was pretty entertaining to see.  Events included a hayride with Santa at 6, cookies with Santa at 7, and a Christmas movie in the field at 8:30.  We’re not sure but we think at least the movie got rained out.  Yep, it started raining, but we were prepared.  We’d already made a fire and eaten quickly, as the sky darkened, and we spent some time reading books in the tent that night.

Before the rain started, we got a chance to make use of the campground’s pool.  This monstrous pit was nothing like I’d ever seen before.  It was huge, and it was 7 feet deep at its deepest, but there was no drop-off edge of the pool.  So there was no way to jump into the pool – it just gradually got deeper from the edges, like a lake would.  There was a rickety slide with one of the railings duck-taped at the top.  My partner and I slid down it about 5 times each – that was the best part!  It seemed to be not heavily chlorinated; algae was growing at the bottom of the “deep end.”  Another great factor was that it was “swim at your own risk.”  No lifeguard!  And there was a bin for returnables (full of beer cans and bottles) near the gate where you sign in and enter.

So many people had golf carts!  We saw people taking golf carts to the bathrooms, to the playground, to the camp store.  People just driving around on them.  Dogs looking regal in the passenger seats.  Do people pack golf carts into campers and bring them?  I’d never seen this.  Do they rent them from the campground?  I have no idea.

Sometimes when things have been rough, and options don’t seem possible because of mental energy or anxiety or difficulty initiating, mixing it up and going out of comfort zones is the best thing for the mind.  We have a couple more trips planned for this summer.  Trips I’ve been anxious about.  I hope I can just remember how much fun going camping was, and harness that feeling as I get ready to go on vacations!


Medications orbiting my head

 

 

 

 

 

 

 

 

 

 

I drew this picture to illustrate the jumble I feel is going on.  Just to recap, 6 months ago, had a manic episode and was hospitalized.  I previously was not on any medications, but suddenly I was thrown back into all of that – psychiatric visits, side effects, adjusting dosages, trying different drugs.  I’d definitely say the hardest part of the past 6 months was being depressed for a good chunk of that time.  But almost equally hard, just in a different way, is the long term.

Early on, I was cavalier.  I was sure that I’d get off of all these medications within 6 months – just go back to the way things had been.  I was even reluctant to add an antidepressant – things had to get really bad for me to go there.  Now that it’s been 6 months, I can easily say that time frame was way too short.  And I’m also not so sure anymore:  Which drugs are helping?  Which side effects can I tolerate?  How long will I be seeing this psychiatrist?  Do I potentially want to stay on any of these long term?  (That last question scares me – it’s almost as if being med-free has been a part of my identity…)

Some of this journey has felt crazy.  I was having hot flashes and cold sweats, my mouth tasted metallic, I threw up a few times (and I have a stomach of steel).  At one point, I went on a drug called Cogentin.  Its purpose was not to help with symptoms, but rather to help with side effects.  One of the other drugs, Geodon, typically causes hand tremors and a stiffening of facial muscles.  When a nurse practitioner asked if I was experiencing these things, I said, “I guess so.”  So she prescribed yet another thing to add to the mix.  After 3 days of taking it, my nearsighted vision became blurry.  Overnight.  One day was fine, the next day, I couldn’t read the computer screen.  I wasn’t reading books at the time, so that wasn’t an issue, but I remember eating food and not being able to see it and just feeling enormous sadness on top of depression.  I didn’t put the pieces together, but luckily I had an appointment with my psychiatrist 2 days later, and when I mentioned the blurry vision, he said, “Oh, that’s common with Cogentin.”  What?

I also cycled through 4 different antidepressants within a short amount of time.  Celexa, Zoloft, and Lexapro were making me feel famished all the time, which was just making me feel anxious.  I got on Wellbutrin, and luckily that’s been side effect – free as far as I can tell.

Ideally, I don’t want to be medicated.  And it was so easy when it felt like that wasn’t on my radar.  But now I am faced with all these decisions and timelines.  And although there is strong input from other people (mostly my psychiatrist, who thinks I need to be on at least something for forever), it’s all ultimately up to me.

For now, I just advocated for myself to lower the amount of Geodon (mood stabilizer / antipsychotic) that I’m taking.  I feel really happy about that.  I have plans to tackle Klonopin (anti-anxiety medication that I’m using as a sleep aid) next.  As for Wellbutrin (antidepressant), I’m not quite decided.  I’m just going to take these things one step at a time.


A manic episode

I could easily write a 5,000 word essay on this topic; maybe one day I will.  This is an abbreviated version:

Over night, my brain became a frenzied jumble of free associations.  Every system I could imagine (friendships, technology, routines) opened up, and I was in the center of all of it, connecting all the dots.

I thought that Leelah Alcorn, the trans-teen from Ohio who committed suicide, was an elaborately staged message created by a group of people on Tumblr.  Meaning, I thought she was not a real person – more of a call to action, one more thing to add to “The Transgender Tipping Point,” and finally really make some changes happen.

But I thought a lot of things right around this time period, for a couple of days.  I believed I’d been chosen for amazing things, I was choosing my own adventure, and the further I could get before running into a dead-end setback, the more rewards I would gain.  If I made it to my therapist’s office, she was going to give me this new phone I’ve had my eye on.  If I made it through the entire day, I’d be going to a party thrown by everyone I know.  I briefly had the thought, “My partner wouldn’t like that; that’s too much.”  So my logic led me to believe I shouldn’t make it through the day at this rate.  I should definitely get the new phone, but I should see what my therapist thought after that.  Maybe.

Some things were already in motion, and there was no stopping me!  My social media outlets were blowing up!  My blog was going to get huge at this rate, and I was going to get a book deal out of it.  Should I quit my job?  I kinda like working there, as a janitor, so I’ll keep my job.  I better write a note so that everyone will know I wanna go back to work.  I pulled out one of those Mr. Sketch scented markers – it was Blue Raspberry – and scrawled out really big and doodle-y on a piece of artist’s paper, “I will want to go back to work.”  It was barely legible.  When I showed my therapist a few hours later, in fact, she couldn’t read it, so I just had to tell her I want to go back to work.  I wouldn’t want to be someone who sits around all day, writing their book.  I would get bored!

I called my therapist at 2AM and asked her, “Can you just come over?”  I called her again at 7AM, just to see if she’d drop by instead of me meeting her at her office at 9.  I was making some really cool displays in the house, and I wanted her to come check them out.  I was playing a record – The Days of Wine and Roses by The Dream Syndicate, and everything was clicking into place.  (Actually, the record is still on my turntable, untouched 4 months later – I’m playing it right now.)  The lyrics were making perfect sense and informing me of things I should write down.  “You say it’s a waste / not to learn from mistakes.”  “Textbook case.”  “It’s Halloween.”  “She remembers what she said.”  These messages were of utmost importance.  This record was THE record to end all records.

By 8AM I was so bored and fidgety from doing stuff all night long, that I decided to take off for my therapy appointment early.  I had everything I needed packed – My toothbrush and toothpaste, notes from work, and 6 bottles of hoarded Androgel (my prescription allows me to get more than I need, so I just collect them).  I had no clue what would be happening next or how long I’d be gone after therapy (I might be put up in a hotel!), but I could figure out clothes and other stuff later.

Driving was a bit tricky.  I was relying on intuitive cues, more than the rules of the road.  Fortunately, my gut was telling me to slow way down and put my hazard lights on, rather than try to drive at the speed my mind was racing.  I still got there early; when I arrived, I slammed my backpack into the corner of the waiting room, above the door.  To alert the security cameras that I knew all about it.  A man briskly walked past me and out the door.  He was planted there to exit when I arrived.  I proceeded to be loud and messy.  I dumped out a bin of toys.  I knocked over a chair.  I said, “I’m borrrred!”  I talked loudly about a Mazda advertisement on the back cover of a magazine.  I finally understood how advertising worked – they weren’t fooling me!  In fact, this whole magazine was rigged.  I should just take it with me – I’ll need it later.  I stuffed it into my backpack.  One other therapist was there (this was a Saturday) and she tried to gently corral me until my therapist got there.  She picked up the toys.  She said she’d call my therapist for me.  She talked to me in a steady and soothing voice.  She wasn’t patronizing me.

Finally, my therapist arrived.  We engaged in a delicate dance around each other.  I knew on some level that I was going to the hospital.  But I also knew that wasn’t necessary, and she was totally going to come over and check out my displays and then I’d be reunited with my partner to proceed with the most fun day ever!  In reality, my partner was on her way to North Carolina with family (I’d successfully convinced her everything was fine / I believed she was just out with friends and I’d see her in a couple hours.)  My therapist started calling hospitals for availability, and I conveniently went to the bathroom to shield myself from that stuff.  I came back and dumped out all the contents of my backpack.  This would be more fun.  She immediately sorted things into piles to make sense of it.  She called my partner and left a message.  She asked me what my best friend’s phone number was and I told her.  I left the room again while she talked on the phone.  Before I knew it, my best friend was there!  Magic!  Everything was going my way.

I talked to my friend about the displays and we played Rubix cube.  Suddenly we were all leaving.  They led the way, and I went into the bathroom again.  I wasn’t so sure anymore.  I yelled out, “I set some things in motion, and I don’t know if I want it to go this far.”  We were still just going to my house, right?  My therapist replied, with forced enthusiasm, “Come on!”

I got in the car with her; my best friend went separately.  I curled up into a ball and shielded my eyes from the world.  I started to feel sad; I verbalized what I thought about Leelah Alcorn.  I said, “I don’t know much about it.  I know her name, where she’s from, and that’s about it.”  She had been on the news.  That was big.  What I was trying to convey was that no one knew much about it.  If everyone just saw her picture, her name, and her suicide note, maybe she wasn’t real.  And maybe this kind of stuff happens all the time.  What is real in the media?  Scattered thoughts breaking down.  My therapist said, “I don’t actually know where you live.”  I replied, desperately, “Yeah, but you can find out.”  She had a smart phone.  People with smart phones seamlessly glean information all the time.

We weren’t going to my house.  When we stopped and I uncurled myself, we were at the hospital.  But it still wasn’t too late.  If I just told her this is where it ends, and we go to my house from here, everything could still be OK.  I looked her straight in the eye; I put my face two inches from her face.  I said, “This is where it ends.”  This had worked with my partner a few hours earlier.  I looked her straight in the eye and said, “Everything’s going to be OK.”  I gave her the green light to go on her trip.  This time was different.  My therapist probably interpreted that as, “The journey ends here, at the hospital.”  I meant here in the car.  Still though, I complied and followed her.  After all, my best friend showed up here too, so it probably was all OK.

Five hours later, I was on the psych ward.  I’d been in the emergency department.  My mom had shown up.  I had talked to my partner on the phone – it finally sunk in she was 6 hours away, and she and her family were turning straight around.  My best friend had been with me.  My therapist had left at some point.  I’d peed in a cup.  I’d gotten blood drawn.  I’d signed some papers by drawing big loops over the entire page, not knowing what I was signing, exactly.  But now, it was just me, and suddenly my choose your own adventure had come to a dead halt.  There was no more choosing.  I started yelling, panicking.  “I NEED MY VITAMIN D PILL AND ELDERBERRY SUPPLEMENT!”  I needed to maintain my body’s delicate homeostatic state.  I was given a pill and took it; it was Haldol.  It knocked me out for 18 hours.  Before I faded out, the nurse was talking to me really sternly.  She was really butch.  “Do not start shouting on my unit – we don’t do that.”  “I know I know it’s not like me at all…”  “Also, you smell really strongly bad so I’m going to shut your door.”  Then she started yelling.  “He gets whatever he wants!”  And I was out.