Tag Archives: psychosis

One Year Later and a New Lifestyle

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It’s been a year and a couple months since I last posted and it seemed like now would be a good time to return. It’s odd to think about, but when there are fewer negatives in life, there’s less need for cathartic writing. Catharsis has definitely been the point of this blog and while I’m sure it has been informative for many readers, it has been an appropriate escape and thought collection for me. (Though, at this time, I am not prepared to go back and reread all that I’ve written.)

A little over a month after my last post, I had my chest surgery. It was a reduction, as had been discussed with my therapist and with my surgeon. The results have been great, as the surgeon expected, healed really well. Unfortunately (due to things discussed further down), I am not pleased with it and have scheduled a complete double mastectomy to help ease my mental health.

While I stayed at my parent’s house during the recovery from surgery (as stable a place I could possibly find in my life at the time), I did the final weaning off of the antipsychotics. There was no change in anything. There was no return of hallucinations, no change in mood or connection to the world. It was brilliant.

Near the end of my recovery, I connected with an amazing family and got a job as a nanny. In just a few more days, I will have been working with these kids for one full year. On commencement of my employment with them, I began a life-changing, well, change.

I was provided lunch, which is the same thing the kids ate, and due to certain issues around food, there was constantly a conversation about healthy eating habits. This conversation led me to become more aware of what I put in my body the rest of the week, not just at lunch time. This first inkling of awareness is what started my year of “slow healthy habit changes.”

Slow Healthy Habit Changes

Historically, I’ve tried to change my habits, change what I eat, how I exercise, everything, and it’s always flopped. Historically, I’ve tried to do it as an overnight change. This past year brought about an awareness and change of attitude. When I changed something, it was literally just one thing and it was never big. One week, I realized that I needed to eat something in the morning (I had never really taken to eating breakfast), so I started buying a chocolate and a pop which would get me through till lunch. It would take a further ten months and a further 4 changes (with several relapses) before I adopted a healthy square breakfast with an “adequate” morning beverage. (Perhaps in a couple weeks I’ll switch from hot chocolate to tea.)

I didn’t limit myself to diet either. I spent some weeks focusing on how I interacted with friends, establishing closer friendships, pursuing routine in meeting up with people, and ensuring that I was actually connected with people. I spent some weeks working on how I interacted with the outside world, from exercise to casual hellos with strangers. I spent some weeks looking inward and seeing how my house felt, not denying myself little luxuries (like spice containers or a new shower curtain) and generally making myself feel more welcome in my own space. And I spent some weeks working on how I talked to myself.

I think the biggest change, in all of what I’ve done in the last year, has been in my self talk. I see myself as someone who is able to complete things, someone who can stay on top of things, someone who can do what needs to be done. This wasn’t always the case and certainly wasn’t the case a year or two ago in the midst of my madness.

Through all of these habit changes (because they are truly habits that have been changed), I have kept a careful log of my body size and less careful log of my weight. I knew, during my year and a half on medication, that I was gaining weight, but I wasn’t aware of how much. Sometime shortly after January of 2016, I measured myself and became aware of how much I had actually gained. I weighed in at the time just over 210lbs. The last time I had been weighed (in early/mid 2014) and for the prior ~7 years, I had weighed in consistently around 150lbs. I started trying to fix it immediately, but made no great strides. Even my surgery didn’t change much and actually disheartened me to continuing with monthly measurements. But, through the healthy habit changes (a whole mind/body view rather than a body-centric view), I did lose weight, a lot of it. I am proud to say that I fit into some of the clothing I wore prior to 2015 again. At my last weigh in, I was 163lbs and I know I’ve lost more weight since then.

Transition

While it hasn’t been a key topic in my posts, it is integral to my mental and physical well-being and the key cause of my decline originally. Since the diagnosis by my psychiatrist in the fall of 2015 of hormonal insomnia, I have done a lot of reflective thinking on the implications. When I finally weaned off the sleeping pills, I found that I slept better than I had in all my memory. However, in spring of 2016, I accidentally went off testosterone. I missed one week, then another, and before I knew it, I was back to female hormone levels. While I wasn’t satisfied with the secondary sex characteristic changes yet, I was even more scared of what going back onto testosterone would do to me. Since I started working with the kids, I was keenly aware that while I managed four months of extreme insomnia well enough while working retail and attending college, I would not be able to do the same in childcare. So, I refused to restart testosterone.

With recent clarity, I’ve decided that I can’t let a little fear get in the way of things. I’ve researched hormone replacement therapy (HRT) and how it is approached for people with hormonal disorders (like PMS or endometriosis) and developed a new plan of approach alongside a nurse. Very soon (as soon as I can fill the prescription), I will be restarting testosterone, almost exactly 3 years after my first shot. Unlike my first shot, I will not be taking quite so much at once. In fact, I will be doing a very low dose weekly shot. This will slowly over the course of months or longer be stepped up to eventually get to the full dose that I was on initially. As I have the awareness of my hormonal insomnia this time, I will be able to immediately take actions to correct if things start going sideways. I feel prepared.

Going Forward

It’s funny. As you work to set your life in order, good things follow. The more I worked on my physical and mental health, the more receptive others were to me. I made more friends and engaged more, even if that wasn’t my direct intent. In the last couple months, there has been another huge shift for me. I’ve engaged more with the local Deaf community and renewed my interest in learning ASL (which is going great!). I broke up with my overseas long distance boyfriend. I’ve spent more time reading non-fiction (my not-so-secret passion). I’ve spent more time with people who are currently actively engaged in learning (undergrad, post-grad, and PhD students, as well as other general learning adults like myself). I’ve been surrounding myself with a positive and encouraging community and I’ve been thriving.

A hard lesson that has taken far too long to learn is that it doesn’t matter what you plan for, life likes to throw curve-balls. As much as I would love to become fluent in Dutch, move to Europe (Netherlands maybe) and attend university there, then find a nice man to marry, have kids, find a great job/career working with kids, and eventually retire to luxury, I have to accept that that’s likely not to happen. Instead, I’ve created a new plan.

I am still saving as if I’m moving in a year and a half. I don’t see that as a bad thing even if I don’t actually end up moving. I’m not denying myself the close personal connections that I have with people locally (including one that may turn into an actual relationship, eek!). And I’m actively pursuing to better myself and my education.

Part of that last point is a request for referral for a neuropsych evaluation for Autism/ADHD/other stuff. I have long since known that I am not neurotypical. In fact, my last 6 or 7 psychs and therapists have said as much, point blank, to my face. Several friends who work closely with or know people who are autistic have told me that I fit the mold for the mild end of the spectrum. I’m also keenly aware that I do not thrive in a university setting. If I’m intending to return to school, then I need to do something to ensure my success. I see getting an evaluation as a key component to that. I’m also hoping that a diagnosis will allow me to find better coping and management skills in the rest of my life, not just at school.

Another part of that point is the keen knowledge that one of my largest failings in school has been in notes and reports. I’m working on that, combating it on my terms, outside a classroom, and in a setting where I can work to success with no possibility for failure. I love non-fiction books, and actively seek the ones on topics of most interest to me. I have also picked up a notebook and am taking notes, now, on the books I read. Facts that jump out at me, things that seem of key importance, therapies that could use further research for understanding (hey, I like reading about kids and special needs). I plan in the future to write several research papers on questions of my own choosing and topics of my own interest, with review from friends who have an academic background and will be able to help me build my skills. I’m also intending on spending several weeks/months learning a specific developmental theory that keeps jumping out at me as something I can’t wrap my head around just yet, but I know will show up in whatever line of courses I end up pursing. My hope is that I will build, over the next 2+ years, a foundation of skills and knowledge that I can build on once I do return to school, enabling me to succeed even if I don’t end up getting a diagnosis.

To Conclude

My readers, life is incredible, amazing, glorious. Life is what you make of it. However bad and horrible things may be right now, there is always the potential for it to improve, even in small ways. And who knows, if there’s one small improvement here or there, perhaps in several months you’ll look back and see you’ve ended up making huge strides.

Thank you for reading. (Potential future updates to follow, as needed.)

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As I lay me down to sleep

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The voices come.

As much as I want to hope that I don’t need the antipsychotics anymore and I’m no longer hallucinating, the voices show up as I lay in bed trying to sleep. They’re really disruptive and I wish I could remember what they said so I could write it out. This didn’t used to happen.

Maybe it’s nothing.

Edit to add:
Here’s a sampling of the kinds of things the voices say in that brief few minutes before I fall asleep:

Don’t leave me alone with her, I thought

With who? She asked

Yeah, who? He agreed

Shh, came the child

Right, you’re not really hearing voices, she sneered

He screamed, and screamed, one seemingly unending tone

He’s insane, she said

A child’s giggle

No one will ever trust him or believe him. Ruined for life, he is. She went on

Never going to be the same, he whispered

Let him sleep, the child pleaded

Yes sleep, he said

Fine, fine, that’s enough for tonight, crazy weirdo, she said

Of Psychiatry and Surgery

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Nearly two weeks ago I had my last appointment with my psychiatrist. In it, we discussed where I’m at and where I’m going. There wasn’t much to the appointment, really. He determined that my dose on the sleeping pill was so low that it wasn’t actually doing anything and I should stop taking them when I felt I was okay to (most likely after my surgery). He also felt that the hallucinations I experienced were likely caused by my lack of sleep over a year and a half ago and that now that I’m sleeping properly, I shouldn’t need the antipsychotics. He suggested that once things are stable (so likely after my surgery), I should try going off the antipsychotics and see if the hallucinations come back. We were to discuss my sleep study as well, but the clinic didn’t fax the information over. As of now, I still haven’t heard anything, which probably means it found nothing of note, so don’t worry. The milestone I reached with this appointment is that it was my final one with a psychiatrist for the forseeable future. I’ve been determined to be stable, and in good mental health. There’s no need to continue to see a psychiatrist, though a therapist or counselor wouldn’t hurt.

Five days ago, I stopped the sleeping pills. The first night was okay. I had two rough nights, and the last two nights have been good. I think he was right and I don’t need them. Which is awesome because I’d rather avoid taking medication if at all possible. One down one to go.

Now we move into other territory:
Immediately before that psychiatry appointment, I called the office of my surgeon (for top surgery as the next step in my medical transition to manhood). I wasn’t expecting anything beyond knowing where I was on the waitlist. Instead I was given a surgery date: May 3rd.

At first I was excited. I told everyone. It was awesome, finally have a date! No more waiting! Once the initial excitement wore off, I got nervous and scared and started second guessing myself. I realized that the bulk of the excitement was for the fact that I’m finally able to move forward with my life, since surgery’s put my life on hold for so long. I realized I wasn’t sure my exact reasons for wanting top surgery other than knowing that it was the next step in transition. I also realized that I wanted to breastfeed my kids, which isn’t possible after the kind of surgery I’ll be getting. I freaked out.

I talked to a few select people who generally seem to think if I’m freaking out this much, I shouldn’t have the surgery. To better get a grip on where my head’s at, I scheduled an appointment with a (trans community recommended) counselor, a friend who is a counselor and trans, and the surgeon to see about getting a reduction instead of a full double mastectomy and still have it covered. These appointments are all within the next week and a half, so hopefully I’ll have a better sense of things by then.

I do know, that now that I’ve had a bit of time to think about it, I’m more used to the idea of getting surgery and am kind of looking forward to it again. I still talk like I’m going to get it and the more often I say “surgery’s in two months” the more used to the idea I am. Maybe it was just jitters, but better to get some handle on my thinking before I do it anyway.

I imagine, unless something radical happens, from this point forward this blog will follow my mental health in association with transition and living life. It’s good to know that my brief touch with mental illness was not a step on the true descent to madness.

First Diagnosis

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It’s been a while and there’s things to update.

After seeing my new psychiatrist a few times, he was prepared to make a diagnosis. I’ve been diagnosed with Hallucinations NOS or nonspecified hallucinations. That means that I hallucinate with no known cause. It’s not linked to any other mental illness. It just appears independently. While I’m happy to have a diagnosis (and am glad that there’s not some greater mental illness), I’m disappointed that there’s no known cause. Maybe that will come with more time and conversations with therapists.

At my last appointment, I brought up the fact that I stopped sleeping and my psychiatrist decided he would start investigating. It’s been a year and a half since I stopped sleeping and finally one of my doctors is asking why. I’m so happy about it. The first step in that is a sleep study that will be done later this month.

At my second appointment with my psychiatrist, I got put on Latuda (instead of Risperidone). Within a week, I noticed a marked difference. I was connecting with the world significantly better. I was feeling more emotions. Customers were responding to me more positively. My coworkers commented on me being more positive and outgoing, so did my mom. It was incredible. I had no idea how disconnected I’d been, how distanced from the world I’d been, until I started to reconnect with it. Now I know, and I hope to never experience that again.

Unfortunately, Latuda isn’t covered by my insurance, so I had to change the meds again. This happened at my last appointment (a week ago) where I was put on Abilify. It’s too soon to tell how much it will impact me, but from what I’ve read of other’s use of it, it seems to work well.

In the non-mental health side of things, I’m still waiting on the CT scan of my pituitary gland to find out why I’m lactating. There’s still no word as to when it will be. I hope it’s soon.

In terms of transition, well, I found out that the three to four months until surgery after consult that I was quoted was wrong. It’s actually closer to nine to twelve months. So, instead of being at a point where I have less than a month until surgery, I’m waiting at least five more months. I’m disappointed, but I should have known better than to hope it would be so fast. Maybe there’ll be a cancellation. I do know that I have enough money saved up now to cover my expenses for two months off work, so that’s a stress off my mind.

In general, currently, I’m doing okay, a mix of good and bad. I officially dropped out of university. The program I was in just wasn’t a good fit for me and I failed both classes. I also realized that the work I want to do doesn’t require a degree, so why am I shelling out the money for the degree? I cancelled my loans for the second semester and am just waiting on hearing about repayment to find out what it’s going to cost me each month. Hopefully not much as it was a fairly small loan. My brother and sister in law got me colouring books for Christmas and I’ve been slowly working my way through them. I find it relaxing and engaging and it’s nice to do something other than just staring at my screen all the time. On the down side, I’ve lost a lot of motivation to do anything. I’m finding it very hard to convince myself to do anything and am not even getting out of bed until the last possible minute before I have to go to work. I’m not going out to meet with friends (not helped by my work schedule where I’m scheduled to work the only two days anything happens with my friends). And I’m not going out of the house to do anything except buy the necessities, go to work, and go to the doctor. I’m trying to find something more to do with my time, but I don’t even know where to start. I’m hoping the colouring will at least help. Part of the lack of motivation to do anything is impacting my sleep as I’ve lost the motivation to go to bed. I still don’t get tired, so it’s hard to convince myself that I need to go to bed. I’m finding more and more that I’ll only actually go to bed when I get bored with what I’m doing on the computer. In the last week, I’ve had 3 sleeps. I know it’s not good, and not healthy, but I can’t seem to convince myself otherwise. I’d rather stay up and actually do things than go to bed where I’ll stay until I absolutely need to get up, sometimes twelve or fourteen hours later.

Here’s to hoping things will improve.

Time Flies

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I suppose I should update, since it’s been a while.

I got in to see the counselors at the university, specifically, the counselor that was recommended by my counselor at the college. He’s a great guy, listens well, helped me get in a good headspace. I saw him twice before I realized I probably don’t actually need counselling right now. I’m in a pretty good space right now and don’t feel the need to work through anything.

I also got in to see a psychiatrist at the university. Finally. The appointment was over an hour and a half long and went through my entire mental health history. He actually read my files going back years. He took me seriously. I recognized my need for a diagnosis and is working with me on that. He gave three preliminary names of what I might have, but he wants more information before he actually gives a diagnosis. Schizoaffective disorder, borderline personality disorder, and Asperger’s (high functioning autism). He gave me a printout to have my parents fill out and they went over it when I was up to see them for Thanksgiving. Hopefully that will give him some clues. I’m ready to be armed with a diagnosis that will help me find ways to cope and make things better.

In a non-mental health vein, something happened with my physical health that has been weighing on my mind as well. A couple months ago, I started lactating. I saw a walk-in doctor first and she ordered a battery of bloodwork. I saw my GP a week later and he didn’t see anything alarming in the bloodwork but suggested I talk to my endocrinologist (who I’m working with through my gender transition because I’m on hormones). I saw him a couple weeks later and he was concerned by my bloodwork. My prolactin level was 99, normal is 25. He didn’t seem to think that it was because of my being on testosterone (though that’s a common problem) and ordered a CT Scan and some more bloodwork. I’m still waiting on the scan, but it should happen soon. He said that the scan would look for a growth on the pituitary gland which would cause the spike in prolactin. My research has found that the growths are fairly common and mostly benign, but I’m still worried. What if it isn’t?

In terms of transition, everything’s on track. I got in for my consult for top surgery a couple weeks ago, which means the surgery itself will be in three to four months, a lot faster than it was originally going to be. I’m excited and more than a little nervous. Part of the nerves come from wondering if I’m going to have enough funds saved up to make it through the two month recovery. I hope so.

I think that’s everything of note.

Counselors

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I’ve continued working with my sleep counselor at the college. She currently has me not reading in bed and getting up at 11am every day. At least, that’s what’s supposed to happen. It takes longer to fall asleep if I don’t read in bed, and I can’t seem to convince myself to get out of bed in the morning, even if I’m wide awake. I see the counselor again this Thursday and that’s the last time I’m going to see her. It just doesn’t seem like there’s anything else she can help me with. She has spoken with my GP and he’s going to investigate my potentially having restless leg syndrome and maybe send me to the sleep clinic to have an evaluation and see if there’s anything else going on. Beyond that, I don’t know what to do about sleep. Everything seems to circle back to it being a problem.

I saw my regular counselor at the college last Thursday. That was my last appointment with her. She’s given me the name of a counselor at the university (where I start in the fall) and I’m to make an appointment with him. She also agrees that I need to get in to see a psychiatrist. (I had a friend/coordinator helping me with that and he got nowhere with general psychiatry, same as I got nowhere with them.) The counselor reminded me that there’s psychiatrists at the university for students and suggested I get on with one of them. I’ll have to go to their doctor’s office and get a referral through them, but it should work and I should get in to see someone fairly soon, at least reasonably soon.

Other than that, nothing’s really been going on in my life. I need more going on in my life, but I don’t know where to start, especially since I’m not getting up in the morning. Maybe that’ll change with time though… maybe.

prescriptions and consultations

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A week after I went to the hospital, I saw my GP. He decided to up my dose again. I’m now on 3mg of risperidone. He prescribed me three months worth of that and the sleeping pills and had me book a followup in August.

I heard from general psych a month and a half after I got the referral from the hospital. They referred me to the gender psychiatrist I saw and refuse to talk to me further about the problems with that referral. I have yet to hear from the psychiatrist, so we’ll see how that goes.

A week ago, I had an appointment with one of my therapists at the college. She’s the one who specializes in sleep. She has me doing another 2 week sleep log to see what it looks like with me on my meds. So far, it doesn’t look that bad, except I’m sleeping too long and not getting out of bed after I wake up in the morning. She seems to think that I might have restless leg syndrome, which is contributing to my inability to sleep. I don’t disagree. In order to get a diagnosis, though, I need to do a sleep study. In the meantime, the sleep therapist wants me to try sleep training a bit to get into better sleep habits. This means she wants me to stop reading in bed. Reading’s the only thing that gets me to sleep. I’ve tried reading then going to bed and I just lay awake for hours on end. I see her again in a week.

Today, I got the news that I have a consultation for top surgery (breast removal for female to male transgender) in January. I’m very excited about that and can hardly wait.

Over the last few months, I’ve seen my mom a fair bit and every time she’s said she thinks I look spacey and seem flat. I agree that I’ve been flat. I don’t know what the trigger was for that change, but it was worse than ever before. One of my customers even mentioned it to me. It’s gotten better in the last couple weeks and I’ve been excited and happy, smiling and joking again, so I think I’m on the mend from that bout of depression?

During that same time, I was experiencing heightened anxiety, specifically around going to work. The way my coworkers were acting towards me was making me anxious. I got talked to about my own behaviour at work and how I contributed on a shift, which really didn’t help any. Our store moved though, and since the move, things have slowly been getting better. I’m less anxious now than I was a few weeks ago, which is really helpful for the rest of feeling better.

Other than that, I seem to be doing okay. As far as I know, I’m not hallucinating, though I suspect I’m seeing flies that aren’t there, but can’t confirm. I’ve been eating decently, not great. I’ve also been more active riding my bike. Riding the bike is tough, especially with the sleep schedule, but I’m working on it and getting better at just doing it. I want to be in better shape, not just in general, but specifically for top surgery.

I think that’s it.