Tag Archives: doctor

Physical Decline

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Today, I sat to chop my vegetables to make dinner. I’m an energetic person, always on the go, always moving, reluctant to sit for any length of time. My kids complain that I move too quickly, but they love it that I’m up and down with them, that I play dramatically with them. My friends are always after me to slow down when we’re walking somewhere. Friends and strangers have remarked on my sprinting when something comes up and I need to chase someone or something (returning dropped items, fetching kids from danger, grabbing paper or plastic floating on the wind…).

But today, I didn’t have the energy to stand and dance and sing while I cooked for an hour and a half.

I’ve been in pain continuously for at least the last 5 years, but much longer than that I know. You learn to ignore pain as much as possible, when it’s a part of your daily life. I learned to ignore it. I’ve had a high pain tolerance for a long time and when something bugs me, it’s always something big. I generally manage to just push aside and push through everything unless it’s sharp, strong, and long.

I didn’t notice it at first, but I know that about 4 or so months ago, my pain started getting worse. It’s migrating, which means that it’s never stays in one spot, the spots that hurt move. Usually it’s only about 2-5 spots that are noticeably sore. Historically, they’ve all been under 5 on the 1-10 pain scale. 5 is my threshold for paying attention. Below 5 and I ignore it, above 5 and I’m attentive. 7 is when I start getting concerned and doing something about it though. Starting in the last 4ish months, the spots of pain are up in the 6, 7, sometimes 8 range.

Paired with this, I have lower energy, I’m not as gung-ho ready to run as I normally am. I tire quicker. I’ve noticed in the last month that I am always on the lookout for something to sit on, and failing that, something to lean on. If I’m not moving, then I need support.

I thought I was fine. Really, I did. It was bad enough that it was raising alarms, but not so bad that I was willing to do something about it. I’m dealing with a lot of things medically already and I didn’t want to add one more to the docket.

Three weeks ago, I went camping with some friends of mine. Just outside of town, middle of a small bit of forest, tent camping. It was nice, fun, enjoyable. The second day we were out, the three of us went for a walk. My knee was hurting so bad at the beginning of the walk, that I was limping. I ignored it, as per normal, and did my best to enjoy the time with my friends. Eventually the pain shifted as it does, and I stopped limping. Then, it was like I’d walked into a wall. I was in physical pain from head to toe. It was like all of my joints and all of my muscles were crying out at once. Still, I kept going. There wasn’t really anything my friends could have done and there was no where to stop and sit until we got back. After a bit longer, 45 minutes into our walk, I hit another wall. I felt like I had no energy left. Nothing, nada, zip, zero. But, we were on our way back and I knew once we got back, I’d be able to stop. I also didn’t want to concern my friends (for fear of them deciding to pack up and head home right then), knowing it would eventually pass. We were on our way back anyway. But each and every step felt like it was taking every drop of my energy to make. We were only walking for an hour, but it took everything out of me. I was right though, eventually the pain did pass. I did a few things that usually work to get my energy back and some of them helped, though it took a few days of recouping at home to fully recover.

Since then, it’s been a fairly quick downhill. I’ve been doing everything I can to ignore the pain, knowing that if I focus on a thing, it always ends up getting worse. I said that I wouldn’t see a doctor until either I had more free time (after my current work contract ends in a year), or until it was impacting my work.

Earlier this week, I ended up calling in and booking with my GP for the end of the month (thankfully a day I already had off).

I’ve gotten to the point where, even if I wanted to, I couldn’t ignore the pain. I’m notorious for avoiding medication until I absolutely need it. (Trained myself out of needing my inhalers for asthma in high school that way. Also took way less pain medication than I should have after my surgery a year ago.) I’m choosing to sit over stand all the time. It often takes me close to a minute to get to standing from sitting on the floor or ground. I’m starting to seriously consider taking the odd dose of ibuprofen.

Yesterday, I went out for a walk with a friend of mine. For the first time in a very, very long time, I asked someone to slow down. She was walking too fast for me! Just a few months ago it was her asking me to slow down. We ended up wandering around town for almost 2 hours before finally stopping somewhere that I could sit. I realized then that it was the longest I’d been vertical continuously in weeks. After we kept going, she lit up a joint (weed, for the uninformed). She’s got a medical exemption for it and has been trying to get me to try it and see if it does anything helpful for me. I have tried weed several times in the past and have had zero effect from it even when everyone I’m with does. She had gotten me to try it once with her before and it didn’t work then. Yesterday, at the end of our walk, she pulled out her joint and asked if I wanted to get high. I laughed and reminded her of the futility, but said I’d try again if she was okay with potentially wasting her weed. We have different ideas of what classifies it as wasting, so we shared the joint. As per my history, I didn’t feel any different afterwards. When we got back to her place, the three of us (me, her, and her boyfriend who’d not gone on the walk) snuggled on the couch together and watched some movies. I left about 2 hours later and on my walk to the bus I realized that I was walking normally for the first time in a long time. My pain was significantly reduced! The effects lasted until after midnight (smoked at about 730) before they started to fade. I still felt less pain and more energy when I woke in the morning (no more sleep than usual). But, by noon, I was almost back to where I’d been before the walk. By evening, I was so done that I couldn’t force myself to stand long enough to chop veggies. Even sitting, I needed breaks.

It’s a sad comedown. It’s not what I want, not what I ever saw of myself. I’m hopeful that the answer will come back from the doc that it’s celiac (there’s a history of it in my family and I was born allergic to wheat, it’s high probability). That’ll be the easiest answer. I’m worried, however, that I’ll be facing another round of test after test to find out sometime down the line that it’s actually something like fibromyalgia or MS, things that will be with me for the rest of my life either staying where they’re at or slowly getting worse.

I’m coping, I’m trying not to focus on it too much. And I’m seeing the doctor soon. It’ll be okay. Right?

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Hitting Walls

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I talk sometimes in my life about hitting walls. I’ll hit physical walls of just not being able to do anything physically anymore or emotional walls of not being able to cope with anything else emotionally. My friends use the terminology of “spoons” from Christine Miserandino and her essay “The Spoon Theory” wherein you only have a certain number of spoons for a day and sometimes it takes all of them to do simple tasks. Spoons are a new part of my vocabulary too.

This past weekend, I went camping. It was my first time camping without my parents and my first time camping with a tent (not an RV) in about 15 years. One of my friends suggested it a few weeks back and I latched to the idea. People have suggested camping with me in the past, since I’ve been an adult, but it’s never panned out and often they’ll end up going and neglecting to actually tell me when they’re going until after the fact. I told my friend this and he told me that he would make sure it would actually happen this time. However, the whole leadup to the trip was fully anxiety inducing for me.

There was a lot of back and forth with my friend about when and where and what was needed and who was bringing what. I made at least six lists related to the trip between lists of who to contact, lists of what to bring, lists of what to pack, lists of what to buy…

I left for my first aid course on Friday morning (with only 2 hours sleep) not knowing who was picking me up or from where, just knowing that I wasn’t going home. We managed to get to the campsite without incident on Friday evening and it even felt awesome. The first part was just me and one friend (not the one who helped plan it all), with no vehicle. Another friend joined us later on and we stayed up late chatting and playing games. We went to bed late and I was up with the crack of dawn.

In the morning, we went for some walks, chatted, played some games. On our walk just after lunch, I started feeling an ache in my knee. I get aches all over my body and have for a long time, so I thought nothing of it, however it did hurt bad enough that I was limping. After a while, as per normal, it went away. Then, I got pain again. This time, all over my body, head to toe, in random spots. All of it was fairly strong, but nothing I haven’t pushed through before. We were enjoying the walk and far enough away from our site that turning back wasn’t really an option, so I just pushed through and didn’t say anything.

About 45minutes into our walk, I hit a wall. I’d already hit a wall of pain, but I was pushing through that. This wall was different. This wall was physical exhaustion. This wall felt like I’d just gone for a 10k run and every single step and breath was effort beyond what felt like I was capable of doing. Feeling like I didn’t have a choice, I kept going.

When we got back to the campsite, I told my friends that I needed some quiet time alone with a book. I grabbed a book and vanished into the woods. The one who came late left and the other who was staying went to lay down. I was so glad they decided to do their own things because I had hit another wall in terms of emotional output. I’d run out of spoons, no more ability to deal with people.

Reading wasn’t helping and not knowing who was coming when later that day wasn’t helping either. I wandered off and made connection with the two friends who were coming later that day to find out what the plan might be. That helped me recollect enough to be able to hear what my body might actually need for me to recoup myself.

I’m grateful I packed my pocket knife (a tool I typically keep locked away due to self harm associations from my past) because I pulled it out and found a couple good sticks. I spent most of the afternoon carving a crude knife and spoon. (It seems entirely backwards that doing a physically intensive craft such as carving when feeling physically in pain and drained would help, but it really did.)

With more energy under my belt, I was able to go for another walk with my friend and play some games. When it started to rain after dinner, we tidied up the site and moved into the tent. Our other friends arrived and we played games late into the night again. One of my friends (the one who helped organize, the one who’s been my rock in this emotionally tumultuous time, the one who’s about to hide away while working on his thesis for several months) hugged me well and gave me a massage and physical connection while we chatted. It helped me come down some more and collect myself more, but it wasn’t really enough. This time, I got less sleep and was up with the crack of dawn again.

When I got dropped at home, I almost immediately wrapped myself in the borrowed weighted blanket. I ended up having a nap under my regular blankets (sheet, blanket, quilt) and the weighted blanket. Napping is a thing that I actively avoid given my issues with insomnia and historically has led to poor nights sleep, but apparently I needed it yesterday because I slept for 2 hours (making for a total of about 11 hours in 3 nights) and I still slept a full 7.5hours last night (also under full bedding and weighted blanket). I woke up this morning finally feeling refreshed and more myself.

The Take Aways

My take-aways from this weekend are not what I was hoping for. I really enjoyed the time I spent with my friends out in nature. It was great to connect away from technology and distractions, be able to get to know each other better and to just be with each other.

I didn’t know that I couldn’t handle that much time in close proximity with people.

I didn’t know that I needed my personal space to that level.

I didn’t know how pervasive the pain is that I’m dealing with.

How to Deal

I’ve fallen hard on the side of “extroversion” with spending more and more time with people. I know I need a balance of people time and alone time and this weekend really drove that point home. I’m not an extrovert. I’m also not an introvert. But I do need time in both spaces. I’m going to spend some time working on finding a better balance of this so that I’m less likely to hit those emotional walls, to run out of spoons, and be more likely to actually be fully present when I am with the people I’m with.

The pain is another challenge altogether. I have a limited amount of time off that I can take for work and I’d rather take it to enjoy time than for appointments. This coming year I have a lot of appointments between what’s going on with my transition and going back on testosterone and with what’s going on with my mental health on both the crisis/trauma side of things and the neuro-divergent side of things. I know if I were to ask a doctor about the pain, that I’d find myself in for a lot of appointments and physical assessments while they try to figure it out. I’ve been coping with it for several years already with very little change in presentation. I feel like i can cope for one more year. There’s also a possibility that it’s a physical manifestation of my mental health problems and that there would be no answer from the doctors. If that’s the case, then the pain would slowly improve (theoretically at least) as my mental health improved. So, I’m playing wait and see. I’ll go to the doctor in a year, when my contract is up with the current job I have and when I have more flexibility about what I do. Or, I’ll go when the pain impacts my ability to do my job.

More Appointments

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Today, I saw my GP. I got to ask for a referral to get a diagnosis for some kind of a-neuro-typicality. I’ve known for a long time that I’m not neuro-typical, but I haven’t felt the need to get a diagnosis for it. Some of my past therapists and psychiatrists have suggested that I might have ADD, ADHD, sensory processing issues, OCD… My last psychiatrist did a brief assessment between me and my mom and told me that it was very likely that I fell on the Autism Spectrum (the “Asperger’s” end), but that he wouldn’t give me a diagnosis.

So, today, I had a thorough talk with my GP about the potential diagnosis, the first steps in the process, and why I’m seeking an answer now of all times. Despite living in the land of “free health care,” the diagnosis is going to come out of pocket for me. I’m okay with that, in the long term, I feel like I’ll save money. I’m seeking the diagnosis because I intend on returning to school. I know that I don’t do well in a university classroom, and I want to change that. I feel like having a diagnosis and answers about what can help me, will enable me to get the assistance and accommodations I need at university in order to succeed. It may cost a bunch to get the diagnosis, but in the end, I’ll save money by actually completing my courses instead of failing them and ending up with a higher earning potential.

Tuesday (two days ago), I had a different appointment. I had my intake with the local sexual assault clinic. I don’t know if I’ve talked about this in past posts, I don’t read my post history. I was in an abusive relationship for two years fresh out of high school. My first sexual encounter (in grade 12) was coerced. When I was a live-in nanny and doing everything I could to escape the abusive household I worked for, I spent a lot of time at the bar. One of those nights, I didn’t go “home” and ended up spending it with someone I thought was a friend, who raped me.

I’m dealing with a lot of anxiety and emotion lately and I feel like I could really make use of the clinic’s group courses that they offer to deal with everything that’s coming to light right now. However, I’m not sure that counselling with the center is what I need because so much of what I’m dealing with is life-long, not just what’s gone on since sex became a part of my life.

Self-harm is one of those things that pops up as a life-long issue. I have three potential earliest memories. 1: A dream, very vivid, thought it was real life, and related it to my family on waking as “yesterday” until I was corrected. 2: Sitting in the stroller beside a brick wall, trying to work out how the buckle functions so that I can escape and go play. 3: Sitting on the top bunk of my sister’s bed, with a hammer I had stolen from the garage, hammering at my knee trying to break my kneecap. I cried when I couldn’t do any damage. I had a plan for if I had succeeded to “fall” off the bunk then claim I had fallen and that’s how I broke my knee.

This stands out because it’s a clear thought, clear plan, and a distinct memory. However, there’s nothing in my head for before this (all three of these things happened within a year of each other, if not closer together). Self-harm is one of those things that doesn’t just spontaneously appear. There has to be a reason, a why, a cause. You don’t just wake up and decide “oh, I’m going to do permanent damage to myself.” Something has to happen to you first. One group that’s more at risk for self-harm is those who are LGBT, of which I am both G and T (gay and trans), but at that age, I didn’t know or have any inkling of either. It would be years after this age before I started really expressing frustration about gender expression. Self -harm typically doesn’t start to show up until late childhood/early teens, and this memory is definitely from when I was no more than 3.

All this boils down to a question that popped up when I was hanging with a friend, refocusing, after the intake meeting:

Did anything happen to me (and possibly my sibling) when I was quite young that I just can’t remember? Does my sibling remember?

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.)

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

Standard

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.