Friday, June 9, 2017

Three-page Letter to Doctors (a.k.a., I Have Had It, Officially)

I am writing because I have some concerns regarding my treatment, and—as an autistic person—I feel most comfortable expressing myself in writing. As such, I may not have provided the most appropriate descriptions of my current situation at past appointments. Following the rhizotomy, I experienced severe pain at the site for approximately 3 weeks. Since that time, I have had no pain in that area whatsoever until 2-3 days ago, though it is intermittent and slightly different, which leads me to believe it may be associated with aggravation of problems in other areas. As I mentioned previously, the most severe pain occurs directly to the left and right of the vertebrae in my lower back, as well as right over the spine in the same area. This deep pain is accompanied by muscular pain most of the time, which ranges from tightness to a feeling of cramping. I also experience pain very far to the right and left (more intense towards the right), at or above the crest of my hip. This pain also causes the muscles in the area and in my side to spasm. Over the past year, the pain has seemed to worsen in these places, such that any bending, twisting, or sitting (or staying in any position for too long) causes dramatic spikes in pain. However, I am in pain all the time. The pain seems to be accompanied by a feeling of pressure. I feel physically weighed down in this region, and I feel like I cannot stretch to full extension. Chiropractic adjustments seem to help tremendously with relieving that feeling and the pain that radiates to the outer regions of my lower back. These also help with the pain around the center, though the effects do not last long at all (8-36 hours), and attempting to bend, twist, or move too drastically (which isn’t very much these days), will cause the symptoms to return.

At my first appointment with Dr. Gerszten, I was told that the rhizotomy would be the first in a series of steps aimed at identifying the source of the pain, in the event that the treatment did not result in complete resolution of symptoms. When I was told that I was again being referring to another facility, this came as a shock. I’m unsure of what this means. Will this treatment occur in conjunction with these other steps, or am I being passed along again? I do not mean to sound harsh in this case, but it’s a very frustrating experience. I don’t think I have been able to express just how, but please allow me to try.

The only things that have been able to improve my level of functioning in life—alleviate symptoms of anxiety, depression, overstimulation/sensory overload, intrusive thoughts, and many others—have involved physical activity. Previously, I was preparing to compete at the national level in bodybuilding. I have won several competitions based on my ability to dance. I have played sports for my entire life and built a career as a fitness professional while striving to achieve my long-term career goals. Over the last 2.5 years, I have watched my entire life fall apart. I spend most of my time lying in bed, unable to deal with the thoughts or find any way to stop them. (Medication is not an option. I have tried roughly 2 dozen in my life, almost all of which have resulted in severe side effects. The others blunted my ability to feel and caused depersonalization to varying degrees.) I cannot complete even the simplest task due to a severe regression of executive functioning skills, which is why I have spent hours every day since the phone call regarding the next step trying to write this message. Every task, even getting up to go to the bathroom, has become this arduous. I cannot do very many things myself. Until several months ago, I was able to go to the gym, albeit doing very basic workouts in comparison and requiring assistance to be able to move throughout the facility and lift things to the appropriate position. However, the pain in the central region of my spine has worsened such that this is barely possible, though I continue to try to do as much as I can, within reason. In addition to greatly improving my mental health, these activities have given purpose to my life. I have had none of that over the past 2 years. My entire life has been consumed with pain, just making it through the day. (I’ve also attempted various forms of therapy with no success, and I’m very familiar with the psychological aspects of pain.) Even at my best over these past 2 years, this level of functioning has been unacceptable because I am still incredibly trapped and dependent on others. I want to begin living my life again, and I’m worried about this next option.
I do not want to attempt conservative treatment—lie in bed for 90% of the day—until others decide that I am old enough for surgery. Do the years until then not matter? Or the years I have spent barely leaving my house, losing my home several times, losing contact with friends because I physically cannot do anything with them, losing opportunities to advance my career or return to school? Even at its best, again, it has been unbearable. But I’m not the type of person to show pain on my face. I blame that on how I was raised and a general insensitivity to pain until it becomes life-threatening. (Example: I broke my hand in several places in 5th grade, but I kept skiing for three more hours before I told my teacher.) But I cannot handle living like this, mentally or physically. Even now, I don’t feel like I have adequately expressed the level of distress this causes.

Some options aimed at identifying the source have been presented to me in the past: facet joint injections or rhizotomy (bilateral), another spinal injection, discogram, etc. I’m absolutely willing to undergo all of these, but I need to know the plan, its likelihood of success based on published evidence and clinical experience, and what happens in the event that the plan fails. I’ve also considered asking about Celebrex, as I know that the risk of stomach issues like I had experienced with other NSAIDs is lower. I have had several injections, undergone physical therapy three times, tried multiple NSAIDs, tried two anticonvulsants that both resulted in a reaction referred to as DRESS syndrome, have been through psychological counseling/treatment in various forms, and I just don’t know what else to try at this point. What else could give me my life back. And that is important to me: MY life. And that’s not a life of sitting around, watching movies, and the like.

I do have some additional information about symptoms that might be interesting. When I have been able to make it to the gym, I squat using a weight belt, which I began doing 6 months ago. After squatting while wearing the belt, I’ve experienced a complete reduction in pain upon taking it off, which lasts 20-40 minutes. I do feel some level of pain if I attempt to move suddenly during these times, but I found this to be quite curious. The problem I have is that, even in pain, I can still do a 2-minute plank (down from 4 min since injury), and my abdominal muscles always outlast my back. I have attempted to do back exercises to strengthen these muscles as well, but the issue is not about form or weight. If not in pain, I feel confident that I could do everything I could before. However, I have been experiencing another symptom that I did not believe was related. I’ve been having pain in my very low abdominal area that extends to the groin on the right side, which seems to worsen with strenuous activity or sitting completely upright. This has been going on for 8 months, though I originally assumed it was related to the general abdominal swelling/discomfort I have had for about the same amount of time. I have been unable to make my appointments for an ultrasound, so I still do not know about this. It’s been difficult to leave the house, though I intend to reschedule soon.
I apologize for the length of this message, but I do not feel that I have adequately explained how desperate I am, how incapacitating this is, and how much work it takes (physically and mentally) just to make it into these appointments or leave my house in general. Again, this is not acceptable to me, and I can’t continue living this way. If the best conservative treatment can offer me is being able to shower and walk down the street—and not allow me to do things I love—then this is not okay with me. I’d really like to discuss an actual strategy. Thank you for your time, and I hope we can talk soon.

Friday, April 21, 2017

Inherently Autistic Ranting (This should be the title of this blog.)

Every time I try to write about my experience as an autistic person, I fail miserably. I get overwhelmed by the very thought of organizing all of that information into something palatable and succinct enough for neurotypical people to remain engaged. Do I begin with my childhood, during which my queerness and neurodivergence were all too evident to everyone but me? During which I remained blissfully unaware that others did not experience the world as I did, until—little-by-little—I learned the hard way that my way is not the only way, that I am not always right, and that no one really wants to hear me talk about Ghostbusters for three hours? Or do I start with telling you about my here and now, about how the last several years have taken me to the darkest corners of autistic experience—where most would have me stay—and brought me back to one of the most fundamental lessons of my millennial childhood? “You are awesome, and fuck the part of the world that dares to tell you anything different.”

I still don’t know where to begin, which I suppose is in itself a very autistic thing. I remain stuck on the same idea, going over the same list of pros and cons in my head ad infinitum. Unless you give me a place to start. Tell me what you want me to write about, specifically, and I’ll have a hard time stopping. Even to sleep.

Let’s just pick something and say fuck it.

Delayed understanding of friendship? Incredible memory? Obsessive? Executive dysfunction? Speed reading? Visual thinking? Experiences of abuse? Being erased? Feeling broken or inhuman? Intense creativity? Comorbid mental health disorders? Well, fuck, here we go again.

I’m sure you’ve noticed a pattern here. Most of the items on the list are inherently negative. Many of them conjure images in my head that almost instantaneously lead to flashbacks of traumatic experiences—flashbacks from which I can rarely escape, with or without help. Therein lies the problem. Almost no one believes that there is anything positive about being autistic, unless you count those who fetishize certain “extraordinary abilities”. I’m a disorder. A disease. A sub-human creature who lacks the understanding necessary to be treated on par with my neurotypical peers with regard to human relationships, employment, education, and healthcare. I’ve been the subject of abusive situations more times than I can count, often believing that I deserved it because it wouldn’t happen if I weren’t like this, if I understood the lessons they keep trying to teach me, or just because people like me need to be treated that way in order to function in this world.

Even in trying to discuss my positive experiences as an autistic person, my mind is invaded with intrusive thoughts about how absurdly non-positive most such experiences have been. [Experiences removed for the internet because I'm not ready for that.] I try to remember, experience, and feel happy things. Positive things. Even okay things. But they are immediately tainted by these memories. I don’t even have to try. They’re always there. I mean, I still feel horrendously guilty about shit I did 20-25 years ago. My emotions are almost always all-or-nothing responses.

I keep getting drawn back into endless conversations about how I just don’t see things clearly, I’m misunderstanding something, or about how it’s not worth it to try to talk to me “when I’m like this”. (You mean always, then. Just because I can hide it doesn’t mean it’s not there.)

My mind doesn’t let go. It can’t. I’m trying my best to be proud of who I am. What I can do. But these things are inevitably overshadowed by past, present, future, and imagined negative experiences.
It’s hard not to feel broken this way.

I want to be in a place where I can write a narrative that isn’t going to evoke feelings of pity or make people really glad they aren’t me. Each time I think that I’m ready, I’m not. But maybe I can try.

I am an autistic person. I see the world in ways you couldn’t fucking imagine, from the intensity of colors and sounds to the images and thoughts that move too fast for words to the being logical to a  fault. My experience in this world is not one of deficiency. I am not lacking something essential that neurotypical people possess, for if I were to define any of those qualities as essential to my being a complete person or even a person in general, I would inevitably be denying my humanity and that of others like me. I would be justifying the abuse and manipulation of autistic people. The myriad research papers that describe me as a burden to my family, “caregivers”, and society in general. I am a scientist considered by science to be incapable of acceptable existence, whose self-awareness is regarded as pathological in someone like me but as an example of “practicing mindfulness” in others. My experiences and words cannot be trusted. I cannot be trusted. I am invalid. I am inhuman.

Take your blue ribbons and shove them up your ass.

I don’t need your fucking ribbon. I don’t need your awareness. Like, you can be aware that you’re hungry, but unless you do something about it, you’re still going to be hungry. 

I need you to listen when I tell you that, no matter how many times I force myself to go out when I’m on the edge of a meltdown—whether I successfully avoid one or not—it’s never going to get easier. I can break your fucking leg a dozen times, and it’s not going to get any easier to walk on a broken leg. In fact, the more I do that to you, the more problems I’m going to cause, and they’ll likely last quite a long time. I need you to just accept that I have to do things my way sometimes or they’ll never get done in any reasonable amount of time. I need you to stop asking me the same questions or wanting to explain the same reasons for things over and over again, like you’ve never heard me mention them before. I need employers to understand that you should judge people based on their qualifications for the job, rather than based on how much fun you have talking to them during the interview. I need society to stop equating the worth of a human being to their productivity or palatability. “You can’t make money for us, so you deserve to die.” “Your life isn’t worth living if you can’t amount to anything.” I need people to stop thinking that asking kids with disabilities to the prom out of pity when you have no interest in pursuing a relationship with them is manipulative, self-serving, and cruel. I need doctors to stop screaming at me. Or talking about me like I’m not even in the room. Or ignoring my concerns. I need people to start caring about autistic people once they aren’t cute little kids anymore.

I need people to stop thinking that my right to exist comfortably and be a part of this world is my fucking problem. That I have to earn my right to be treated well. To not be subjected to pain, isolation, etc.

No, I don’t need people to understand that “we’re all the same”. I need people to understand that we’re all fucking different and that this is actually okay. I don’t need to have my unique experiences erased or glossed over to be considered human. I need people to stop being shitty assholes that think that the world shouldn’t be welcoming to as many people as possible. I need people to stop believing that, if only I weren’t autistic, I could have all these things that other people have. To stop believing that being in a relationship with me is a favor. A gift. A miracle. That loving me is a sacrifice. That I’m lucky no matter who dates me because I’m lucky to have anyone at all.

Fuck you.

This could go on for quite some time. I meant it to be a bit more organized. Intellectual. I meant to use more clever phrasing and take my time.


Instead, I needed to be angry and let you know that I don’t need you to decide whether my anger is justified. That you don’t get to decide that, and I wouldn’t care either way. 

Wednesday, April 5, 2017

April-ing

I can't believe how long it's been since I've written anything here. Most thoughts have been shared in posts on Facebook or stored away in my phone. I felt the need to write, but nothing's coming out right now. I worked on an article about the potential ability of scopolamine to treat depression.

For some reason, I'm assigned a lot of articles about mood disorders and back surgery. The universe is ridiculous.

This is as far as I've gotten today:

"I'm taking the month of April to get caught up on not getting caught up in my own head, to write more, to reach out to those with whom I've lost touch just trying to keep afloat.


To my friends who have been patient and have been there waiting, thank you for your understanding. To those who have forgotten about me and those that wish I would be less vocal about my ongoing struggle, I express my disappointment, not anger. I may not be the face you think of when you think of autism, chronic pain, or chronic health problems, but that is entirely why I share so much. People deal with far more complex issues than they let others see. I desire a world in which people are free to share what hurts and heals them, rather than feel ashamed of being human.


This world is more than selfies, good reads, and bitter queens. I want to share my soul, and I want to see yours.


You see, I've always felt that the voice I use when writing is my real voice. Everything else is an approximation. An imperfect translation. The written word is the first way I learned to connect with myself, to reflect and learn to deal with a world that could never understand how I'm wired. I can feel more emotion in perfectly placed punctuation than in trying to decipher the sadness in a stranger's face. This is how I am able to think. To love. I feel the rhythm of the written words, but not the spoken words.


Not writing feels like having duct tape over my mouth.


We're not what or who you think we are. Then again, that's usually how it works."

Whether or not I follow through with anything is up for debate. I've felt nauseous and fatigued for several days. I need to sleep. 

Saturday, October 29, 2016

Synopsis of 2014-2016

I suppose it's fitting that some positive news come my way after my most recent post. I wasn't exactly hopeful when I arrived at the Sports Medicine complex. The doctor was extremely thorough, and he listened to every word I said about my pain, moving my legs and hips from position to position to be sure he understood exactly where it hurt and how it felt. When he pulled up my images, he noticed the disc herniation had actually occurred on my left side, which wouldn't be causing this kind of pain in my right SI joint, thereby confirming what I've been trying to tell doctors all this time--that this pain doesn't stem from the disc problem at all. 

The injection occurred the following morning at 7:45 AM. Since we had to travel from Cranberry to Wilkinsburg, I didn't sleep at all. Within minutes of receiving the anesthetic, the pain had dramatically improved, though some pain was still present, and I did begin to notice a less intense pain in my left SI joint as well, which does make sense. However, I did not feel the steroid injection like I did last time, which makes me believe that the last doctor did not, in fact, inject the medication into the proper area. The anesthetic has largely worn off by now, and I won't really know the extent of improvement from the steroid for another week or so. I'll also be seeing a chiropractor, which I've been told is extremely helpful for adjusting the SI, and starting an intense round of focused, physical therapy. Having pain in both SI joints and some narrowed spacing in my spine concerns me, as these can be signs that I'm developing a more serious condition called ankylosing spondylitis, which is a fancy way of saying that the bones of my axial skeleton may be fusing together. The condition is progressive and has no cure, but some treatments can delay the progression. However, I'm trying to avoid catastrophizing right now. 

I can't stop thinking about the stark difference between this orthopedic appointment and my appointment with the pain clinic a few weeks ago. At the pain clinic, I was treated as if there was no hope. I was told the best thing to do would be to stop searching for an answer and participate in their "pain group", which involved no medical treatment. Just OT, PT, and psychotherapy designed to get you to meet your basic daily needs like showering and bending over. They specifically refused to help me try to find the root cause of the pain. Either that, or they thought I was just seeking drugs. When I had asked what the point of this would be if I could still not do anything I wanted to do, the doctor left the room. It reminded me of a time in the emergency room when a doctor told me that being able to shower and get dressed on my own was "good enough". Or when I fell to floor getting out of bed upon discharge because of the pain, and they refused to help me or manage the pain. 


I'm reminded of the time I was sent home from the hospital with a walker because I couldn't even take one step without excruciating pain. I was convinced I would have to get a wheelchair because it was winter, and I wasn't going to make it a mile to work in the snow using that thing. I ended up quitting out of pride, among other reasons. But I never touched the damn walker. I started stretching and squatting with just my body weight, when I could. It was excruciating. This, in combination with TENS therapy twice a week seemed to help a great deal, but there was still so far to go. Then life happened, and we had to leave Morgantown pretty abruptly. 

Maybe I need to do this for myself, but let me see if I can go back to the very beginning. At the very least, this record will be in one place.

In September of 2014, I was in a pretty rough spot. Having just lost two jobs due to constant meltdowns and uncontrollable anxiety, I sank into a pretty deep depression from which I could not recover. I tried to kill myself, and I ended up in WPIC for more than two weeks. I remember the day I went. It was September 5th. By September 29th, I had been out for a few days, so I decided to take a friend with me to the gym for support. We were training legs, and I was showing him how to squat properly. During my second set, something went wrong. I felt myself give way, and I first collapsed to my knees with the bar on top of me. The safety rails were up, but they were too low for someone as short as I am. I knew immediately that I wasn't going to be able to stand up. I crawled a few feet and told him to call the ambulance. I attempted a few more times, but I could't move my legs. I somehow remained calm. 

When I arrived at the hospital, I remember getting three doses of dilaudid, two of valium, two of oxycodone, and some morphine and flexoril, all within the first few hours. I couldn't move my legs more than an inch or two off the bed...for four days. Since I had no bowel/bladder symptoms, the doctors refused to perform surgery, though I wanted them to. (More on why that may have been a good idea later.) I stayed in Montefiore for a full week. At that point, I still couldn't really move much. I could't even sit up on my own for more than a few minutes. I was sent to Mercy to undergo intensive inpatient physical and occupational therapy. I did from 2-3 hours of PT and 2-3 hours of OT each day, with "homework" exercises to practice otherwise. I spent a full week there, and by the end of it, I was able to walk a few laps around the hall, though most other activities that involved bending and twisting really sucked. The pain was in my lower back, just right of center. It was a pulling sensation accompanied by feelings of pressure, as if I could feel the disc itself bulging. But I pushed myself at home, practicing on the stairs and trying to do more each day until I was cleared for outpatient therapy. 

I started outpatient PT with a pretty amazing team at the Southside Sports Medicine complex, which has the most impressive PT facility I've ever seen. Unlike any other PT I've undergone, this was hard work. It was just like being in the gym, and I was constantly being pushed to progress even further. I also began working out on my own again, with permission from my team, making sure to ease back into things. By mid-December, I was pain free and maxing out on all my lifts. I was in the best shape of my life. (This was even after ending up in WPIC two more times in October-November because my dysphoria/dysmoprhia was unbearable. Meltdowns were happening all the time, for hours upon hours, and I had no way of managing my overstimulation/anxiety without the gym. Related, this is when the ridiculous onslaught of medications began. Also by December/January, I was taking all of the following medications at the same time: Effexor, with the dose eventually reaching almost 600 mg, which is way over the recommended limit; Klonopin; risperidone; Xanax; Ritalin; Lamyctal; Vistaril; and gabapentin. No matter how often I expressed that my psych symptoms were actually getting worse because of this medication and that I wanted it discontinued, my concerns were ignored. Anyway...)

I think February marked a major turning point for me, and that's when things start to get a little fuzzier. My brain was most certainly messed up from the aforementioned psych cocktail, but it is still hard to absolve myself of responsibility for all of the things that happened. In February, I drank way too much one night, and I ended up putting my hands on a friend of mine. It wasn't any sort of altercation, but I was trying to grab her hands to reach for the bottle she had taken from me. Once that incident had calmed down, I knew that I had done something horrible. I also know that I threw myself down the stairs on purpose, but I can't remember if I did that this time, or if that happened later on in the year. The entirety of 2015 feels like a blur. But I ended up back in WPIC, though for only a week this time. And it was not good.

I remember being unable to speak. I couldn't respond to the nurse's questions when I got to the floor, and she began to scream at me. She wanted me to take my clothes off, and because I couldn't comply, she called security. I know I mentioned something about it not being comfortable, but I don't know how. Security came. Four very large men. It was a matter of not even two minutes before I was grabbed by both arms and lifted from my chair. And I was in such a state of overstimulation that I lost it and tried to fall to my knees. I was screaming. Crying. Saying please. The other two men grabbed my legs in the hall, and I was hoisted and carried overhead, very clumsily yet aggressively, to a seclusion room in which I was pinned to the ground with an arm behind my back and one holding my head down while the other two stripped away my pants. At this point, I begged them to stop and told them I would do what they asked, though one remarked, "It's too late for that." After agreeing to comply again, I was injected with a tranquilizer anyway, and they continued to rip away my clothes. We eventually found out that not one person on the floor had read my chart. They had no idea that I was autistic or trans. I was told to sue at that point (and multiple times after), but I wasn't in a place to do that. I didn't stay long that time, maybe five or six days. But nothing was really the same after that.

The next few months are even harder to visualize. Sometime in March, I began to experience pain in my very low back, way to the right. It wasn't anything serious, and I simply avoided exercises that aggravated it for a while. But then I had to avoid even more. Then reduce the weight, at first a little, and then significantly. By May, not only was my brain incapable of functioning, but the pain had also become bad enough that I knew I needed to get help. I consulted a doctor and was prescribed oral steroids. I was absolutely fine by the time the course was over. But I couldn't stay functional for long. I ended up in WPIC again in May on a different floor than I had been used to. The patients were loud, aggressive, and often violent. There was absolutely nothing for me to do except read and eat. I slept almost the entire time. The staff were just as bad as the patients, and I had to fight to have a hearing to get out. As the doctors even stated that I am not a danger to myself, the judge very quickly ruled in my favor, even though they wanted to keep me there even longer to give me even more medication. 

By June, I required another course of oral steroids, but they were less effective this time. I still felt like I managed pretty well, physically, at this point, despite the pain, which was mostly limited to my time in the gym or being on my feet for too long. Pride happened, and it was definitely a disaster, as I spent most of it trying to avoid being arrested because I was crying under the steps at the GLCC, and none of the kids there believed me when I told them I used to volunteer there and needed a safe place to be until Lyndsey came back. I don't even remember the rest of the month. Then came July. I still think about that night. I still have horrible flashbacks from which it's hard to escape. Flashbacks of memories I couldn't remember at the time, flashbacks to being screamed at and thrown out, flashbacks to being in that hospital, to losing everything. The fear hits me, and I feel everything all over again and wonder if and when it will happen again. I want to make this part of the story short because I don't want to fall into that place.

I had a psychotic break and destroyed everything after coming home from the bar (only had a drink and a half all night). I began to drink more when I got home, but I quickly stopped after half a drink or so because it tasted terrible. I remember being on Facebook at that point. The next thing I remembered was standing at the foot of the stairs being screamed at, surrounded by the carnage. He was furious and terrified of me at the same time, and I will never forget how that made me feel.The police came. I waited outside. When they came out, the taller of the two told me that I was a piece of shit and that he would have done to me what I did in there. I was taken to WPIC again to plead my case. I told them everything, and they let me go home. The only problem was that it was no longer my home. I went with a friend after grabbing a few things, but I knew I wasn't going to be okay. I changed my mind and went back to the hospital, but this time, I ended up spending 19 hours in the Mercy waiting room before being shipped out to McKeesport. I had never felt so much psychological pain. I decided then and there that these medications had to stop because I was no longer in control. I was completely detached from everything about myself. The staff did not seem happy about my decision and continued to attempt to force me to take them. At one point, my doctor told me that I wasn't really trans--that I was just gay. That's when things changed for me. I felt more motivated than ever to get out and get on with my life. I consulted Patient Rights booklet as well as the hospital mission statement. I used every piece of information that I could and wrote a letter explaining that my rights were being violated, listing all the relevant details with citations, and that I wanted to be released. I still had to wait 72 hours. When my parents came, we grabbed the dog. I received a hug that told me everything was going to be okay, but I still had to leave. 

The psychological pain followed me, and it was accompanied by the most physical anxiety I have ever experienced. But within a couple of weeks, I started to feel like myself again. I focused on my own well-being. I fell back into my gym routine with ease, got a job, and started spending time with my family. I went swimming almost every day. I looked forward to talking with him at night, and it crushed me whenever I couldn't. It was a rough two months. I went to visit for a long weekend. It was August 20th. I decided to stay a few extra days and go down to our drag family's house in Virginia with him. When it came time to leave, I remember being in the shower and looking at him. We both knew what I was about to say. I never went back to Larksville. 

The physical pain had begun to increase when I started working again. I worked in the warehouse at Dick's sporting goods, frequently lifting objects weighing several hundred pounds and hauling pallets weighing thousands. I spent eight hours a day doing this and working on shipping orders. It took me a day to recover when we had a truck, which I had to help unload from 4AM to 1PM two days per week. When I decided not to go back to Larksville, we stayed with Jackson's mom. We started looking for apartments in Morgantown right away, though it took us until nearly the end of October to find one that would allow all three dogs. (At this point, I had received two additional courses of oral steroids, which only helped while I was taking them. As soon as they stopped, the pain came back.)

Our house in Morgantown was the first one that was truly ours together. We did the best we could to make it our home. One night, my pain changed for the worse. I remember trying to lie down in bed next to him, but I felt a shot of pain followed by muscle spasms. It wouldn't go away. I couldn't walk on my own. So the ambulance came, and I was taken to the ER again. I know I made that kind of trip more than once, but the details get fuzzy again. November and December were rough. I got a job preparing taxes, though I wasn't making much. I was the best, even better than the manager, so I got the job of checking all the returns from all five offices for accuracy. Sounds great, except that I made none of the commission that I would have just preparing returns. Sitting up in a chair that long became impossible. The pain would cause me to tighten to the extent that every muscle in my back, up to my traps, would lock. It felt like I was being beaten repeatedly. I had to leave that job too. Shortly after the new year, I ended up in the hospital again, and again. I was admitted, at which time I saw no fewer than six spine doctors, two physical therapists, a few surgeons, etc. Some told me that the pain was definitely from my disc herniation. Others said it wasn't. Some said there may not be a cause. One said I would be in pain for the rest of my life. The physical therapist here was the first to hint that my pain could be coming from my SI joint, so I began doing my research. However, I still couldn't walk without agonizing pain, though I forced myself to try. Because I could move--no matter how painful it was or how nauseous that pain made me feel--I was given a walker and sent home. But, as I mentioned, I never used it. 

Soon after starting a mostly useless round of PT, we were leaving Morgantown after living in our home for only five months. It was hard to say goodbye. But life happened in a way that neither one of us expected. It was torturous to watch him go through that without being able to do anything about it. But it took a toll on both of us. A few weeks later, I decided to take some time off from the gym to see if that really could get my pain under control, and that was the worst health decision I've ever made. The pain got worse, and I ended up spending almost a month just lying in my bed, only getting up to go to the bathroom and sometimes having no more than a protein shake a day. I lost almost 25 pounds in that time. I had reached a breaking point. I came closer to killing myself than I ever have not too long after. But I survived, and I started over. I did a little more each day, and the weight came back after not too long. I had such high hopes that coming back to Pittsburgh would be the chance to start over and finally get proper treatment. The pain was still largely unbearable, and I'd often require help showering and getting dressed. It was all I could think about. I avoided and still largely avoid most interactions, even though I don't want to, because I get so much more easily overwhelmed, and it's hard to watch other people do things that you can no longer do. I miss my friends. Terribly. 

I had an appointment with the same doctor who had seen me for my shin splints in 2010. I should have known this was a mistake because I have had shin splints for the last 6.5 years, continuously. He of course told me that surgery was not an option at this time and that other options were available, though he didn't tell me what they were. He wanted me to get an MRI, and when I told him I had just had one not two months before, he didn't seem to care. He didn't even look at any of the images his techs had taken. He again wanted to focus on my spine and the disc. I was prepared for the appointment. I explained how I sometimes have trouble remembering to say everything, so I wrote a detailed explanation of the pain and my treatment/experienced up to that point. He told me, "Well, I'm not going to read that, so just give me the abridged version." I stumbled through, trying my best to make sure I got everything out, but he kept interrupting me. He told me to see a colleague of his, but not why. He also told me to see an anesthesiologist for another injection, but he didn't tell me where (spine, SI, hip). I did forget to mention that, when I went to the emergency room and explained that I also had pain in what felt like my lower/outside right hip, they finally took a x-ray of the area, though I had mentioned this several times before. It turns out that I have a slight cam deformity on my right femur. However, it may have been there all my life. Maybe it does cause me some pain, as I recall feeling a pinching sensation every time I spread my legs to the side or when I attempt a split. It now makes sense why I'm not capable of really doing that kind of split. Perhaps the SI issues and associated muscle spasms/tightness have made this more irritating. That's my best guess, given what I know now.

After that appointment, which left me more confused and hopeless, the depression hit hard. I tried my best to keep ahead, but the pain wasn't getting much better. I'd be able to suffer through a day or two, and I would feel less depressed when I could function, but dragging myself out of bed to face day after day of constant, agonizing pain brought back to a pretty dark place. When I had planned to kill myself--the time when I was closest to succeeding--I fully accepted that I would be in pain forever. I was reaching that point again, feeling like there was no hope. I didn't even want to try to get help anymore. It took a little over a month for me to make the next move, though part of that stemmed from the fact that it took forever to straighten things out regarding my insurance. In the meantime, I ended up at WPIC again for a week. And that experience was a complete disaster that left me feeling even worse.

The night before I decided to go back, I remember staring blankly at the ceiling, unable to move. I felt so disconnected, and it really scared Jackson. When I was able to finally get up after half an hour or so, I came downstairs to write. That started out okay, but I remember getting to a point when my brain wouldn't function anymore, and I ended up just writing the word "HELP" until there were no more pages left in the journal. Eventually, the words became violent scribbles and circles. I tore holes in the pages with each stroke. The next day, I ended up starting blankly again. This, on top of the pain, was too much. I knew I had to do something, so I decided to go to the hospital. I requested to be placed on the 13th floor, where I knew I could get treatment from a team that had worked with me previously. After watching a male doctor threaten to 302 a female patient for not submitting to a third strip search for him (she had been taken back and forth between WPIC and Presby), I already felt like I had made a mistake. It turns out that she became completely cooperative when asked by a female nurse. I was called into the triage room to speak with the nurse, and Jackson was about to follow me. She held her hand out against him and told him he could not come in. I panicked and wasn't able to speak immediately, and after a few seconds of silence, her tone became pretty aggressive. She screamed for me to "look her in the eye", and it was at that point that I told her I wanted to leave. She yelled at me to leave the room. I ended up shaking in the waiting room for a while before I was able to come back in, this time with Jackson. She proceeded to talk to him like I wasn't even in the room, telling him how uncooperative I was being, etc. At this point, my anger allowed me to voice an opinion about that. After long talks with this nurse, a tech, and a clinician, we decided it was best that I stay. They told me that I would be taken to 5A and transferred to 13 when a bed became available. This turned out to be a lie. 

5A is essentially small, L-shaped hallway that can only house nine patients at a time in six rooms, each of which is only large enough to fit a plastic bed, not even twin size. I could see on my wall where someone had tried to scratch the word "HELP" in 16-inch letters. The irony was a bit too much for me then. After sitting in the plastic chairs in the waiting room all night, the pain became excruciating. A few hours after arriving on 5A, the bed wasn't helping much either. I couldn't hold it back anymore. I began to scream in pain. I actually cried. It was 30 minutes before anyone came. They told me they would get a doctor to see me. It wasn't long before someone came to assess me. By that, I mean that, while I was screaming and could barely breathe or focus my eyes, I was being told to roll over, move this way or that way, and my limbs were being pulled, etc. Then she left, and I screamed for probably another hour and a half, until I passed out from exhaustion. When I woke up, the nurse told me that I could have Ibuprofen. Nothing else. I believe I mentioned several times that Ibuprofen did not work at all, and that, if it had, I probably wouldn't be there. I struggled to even sit up for the next two days, unable to really attend groups--when they weren't cancelled. At this point, the nurse finally called the medical team again. I was given oral steroids again. Nothing else for pain except Ibuprofen, even though I had mentioned that the combination of gabapentin and indomethacin, with an occasional percocet in bad circumstances, usually helped me at least manage. However, after the first day, the intensity had died down enough for me to at least move around a little more. Around this time, I found out that one of the staff members was repeatedly and intentionally misgendering me, even after being corrected. Most groups were cancelled because they didn't have enough staff, even though we only had four patients on the floor. I remember a social skills group during which the MT handed each of us a piece of paper, told us to ask each other the questions on the paper, and went to go watch TV. I spent most of my time coloring. For two days in a row, we had no groups at all, actually. Just markers that didn't work and a deck or two of cards. The groups made me fee like I was being mocked. In the first group I attended, the MT spent a lot of time talking about how to use physical activity to relieve anxiety and depression. What a kick in the nuts. 

The rest of the team--doctor, social worker, etc.--seemed okay. The staff were just terrible, and I didn't feel like I was getting any treatment at all. I was just sitting there starting to feel more hopeless and worse about myself. We agreed on a short stay so that I could attend my pain clinic appointment the day after discharge, and I feel like the team stopped caring once that decision was made. I had met with a clinician to tease apart a diagnosis. He told me bipolar unspecified. My discharge papers simply said "depression". Now, if you know anything about how psych treatment works, medications for depression can often worsen symptoms of bipolar disorder, so I found this particularly troubling. I was placed on carbamazepine in the hospital, and I would be attending IOP when a spot became available. 

I went to my pain clinic appointment after discharge, and when the doctor told me that I should give up, I felt like running right back to the hospital. The news immediately crushed me. Not only could I not get any even temporary relief, I was being told that there was no hope. Jackson snapped. He quoted the mission statement of the clinic, which clearly states that their goal is to both manage pain and identify potential causes. He accused her, quite fittingly I believe, of just trying to secure another long-term patient rather than actually helping me. No matter how we attempted to explain that I had not received any continuous care over this period, and that the pain does not fit the classic "chronic pain" model that everyone seemed to force on me, she refused to believe that an answer existed. She told me that every doctor I see will find something different and that it would just be more confusing. So, when I asked her what the point of her program would be if I could no longer engage in any meaningful activities, I expected some sort of discussion. I was still willing to have that conversation. But she got up, told me that we were done here, and left the room. We left, but I ended up walking back in to schedule the intake sessions for each portion of the pain group because I felt like I had nothing left to lose. I never attended any of them. 

Though I had begun to feel better with the carbamazepine, something wasn't right. I was now more anxious than ever. I had to leave the bedroom quite frequently to sleep downstairs because I didn't want to wake him with my screaming, shaking, and hyperventilating. They decided to increase the dose a little. This actually seemed to help a bit. I was a week into IOP, and while it seemed to simply offer me an excuse to get out of bed, I figured it wouldn't hurt. 

A few weeks ago, I started feeling itchy all over. It happened a lot, and it was more intense than anything I had ever felt. Within a few days, I had a rash on my chest and arms. I took some benadryl and an oatmeal bath, convinced it must have been from cleaning chemicals in the hotel we had stayed at over the weekend. When that didn't help, I figured I would go to the doctor the next day after IOP. I ended up having to leave a little early because it was getting so intense that I couldn't handle it, and I was so physically exhausted that I felt like I would collapse. We went to urgent care, and I explained that I had started taking carbamazepine recently and that the dose had just been increased not a week before. She asked me about sore throat symptoms, looked at my tongue, if I had been around anyone sick, etc. She consulted with the lead physician. I was diagnosed with scarlet fever, even though I had no throat symptoms, no fever, no strawberry tongue, or any other signs. I took the antibiotics for two or three days, but I continued to worsen. This time, I started experiencing raging fevers. The rash had become raised, dark red, and scaly all over. It was spreading fast. I was having a lot of trouble breathing, and I couldn't stay awake for more than a few hours each day. When I woke up one morning, my lower abdomen was distended at least three to four inches. I knew it was time to go back, but I was terrified of that. I've been to the hospital so many times that I often feel like the won't take me seriously when I do go. We went to the emergency room shortly after finding out that the strep culture had come back negative. I was admitted and diagnosed with DRESS (drug reaction with eosinophilia and systemic symptoms) syndrome. My liver had sustained some damage, along with my lymphatic system and several components of my blood. I spent three days in the hospital, though I didn't move much from bed for a while after getting home. I couldn't even handle looking at myself. My face and body did not look like my own and still aren't fully back to normal, and that messed with my head much more than I expected. There's also like a 15 percent chance I will develop an autoimmune disorder in the next three to five years. Let's hope my luck takes a different turn.

After I got out of the hospital, I started being stubborn. I attempted to deadlift. It didn't go that well the first time; however, I was able to do more the next time. I was moving better. I ended up squatting for the first time in over a year. There was pain, of course. But it was easier to manage, though heavier weight was obviously more painful. I felt more flexible. I knew all along that this exercise is one of the best things for people with back problems, contrary to what most doctors trying to cover their asses will tell you. Given that I use proper form, it's likely that this exercise forces my joints to move appropriately. Squatting is even comparatively easier after deadlifting. In fact, when I listened and eliminated squats from my workout altogether, that's when things slowly started to worsen to this extent. I should have trusted myself and my knowledge of body mechanics, instead of allowing medical "professionals" to tell me that they know better. These past few years were yet another lesson for me, reminding me that not all doctors are actually smart. 

Anyway, my appointment with Dr. Vyas was amazing. Both he and his resident were extremely thorough, and once I explained my symptoms and that most doctors had focused solely on the disc, he immediately chimed quite casually that that didn't make any sense because the disc herniation was to the left, and all of my pain--except when changing positions or in cases of extreme muscle spasms--was on the right. It seemed perfectly clear to him, and he walked me through the x-ray of my SI joints, which showed a little bit of arthritis, though not a significant amount. He mentioned that it's pretty typical in people who put that much stress on the joint. He also made me aware that there were some bony spurs in the area, but that these just happen and don't really cause too much trouble. He seems to think that it may be more of a mechanical/alignment issue, which is wonderful news in a way. There are quite a few options for dealing with that, including injections, radiofrequency ablation, chiropractic adjustments, SI belt, targeted therapy, etc. Finally having a solid answer makes me so much more optimistic. 

I went in for the injection the next morning, as I mentioned, and the team was quite friendly. However, I will never forget this next scenario. As I was lying on the table with my pants halfway down, the tech started rubbing the ultrasound gel on that area in a circular motion. There was silence as the song had just ended on the radio station. Then, with perfect timing, "Let's Get it On" started playing. The silence only lasted for a second as one of the techs let out some sort of snort/giggle, and then everyone in the room lost it. 

Right now, the anesthetic has indeed worn off, and I'm just waiting. I start PT next week, but I'll be working on things until then on my own. I finally feel like I have some control back. I finally feel like I may be able to move forward with my life. (Before I forget, I mentioned earlier that disc surgery immediately following the accident may have been a good idea because it is very likely that this mechanical issue developed during the recovery period. The doctor seemed to agree with me on that last point.) It's hard to keep the mental aspects separate from the physical, which is why I detailed both stories here. 

I'm still nervous that this will be a hard road. I've wasted so much time like this, and I worry about the worst possible scenarios for pretty much every aspect of my life. But, I'm trying to keep that in check. I'm hopeful, finally. I'm trying not to question it. And I'm trying to be proud of myself for even making it this far, though I certainly had help along the way. I'm still working on me, but this has made it so much easier. I'm ready. 



Wednesday, October 26, 2016

Rhythm and Blues

I haven't written anything here or elsewhere in a while, which is due in part to having finished filling the pages of my paper journal some weeks back. That wasn't supposed to happen. I just remember writing the word "help" repeatedly, for roughly 40 pages. I may have been at that same point not two days ago. I haven't slept, so I can't be sure where I'm going with this in the end. 

Because I am me, I ended up in the hospital last week due to what is referred to as drug reaction with eosinophilia and systemic symptoms (DRESS) syndrome, which is a rather formal way of saying that carbamazepine was literally ripping my whole body apart. I believe I've detailed the events leading up to that diagnosis somewhere at some point, so I won't repeat them. However, coming home was an experience unlike any I've had before: I wasn't better. (I'm not counting ER trips due to back issues, as I've already learned to expect that the problems will return.) There wasn't much else that could be done. My liver was beginning to heal, the rash had definitely improved, and the remaining blood tests had all begun to normalize. But the pain, fatigue, and swelling continued, and I worried that they wouldn't ever resolve completely. My body literally looked like it belonged to someone else, and this terrified me to the breaking point. I cried a lot, wondering why shit like this seems to keep happening to me, wondering if this nonsense will ever end. And a part of my brain is still stuck in that loop, but at least it's playing in the background now. 

Nevertheless, I've been forced to confront a lot of things again. I still have dreams. I want answers so that I can finally move toward my goals. I'm not convinced that this is my forever. I feel like it can't be, but the fear and doubt are hard to ignore. I can accept it as my reality for the moment, most of the time, but not as permanent. I just hate how much time I have lost to this--how much it shows on my face. I hate being able to look in someone's eyes and recognize the moment that I've lost them--the point at which they no longer believe in me. 

I'm going to have to start over not too long from now, again. And I feel like this has been a large part of the problem, as I haven't really had continuous care from a single doctor or group of doctors at any point. Maybe starting fresh is a good thing then. It's hard not to feel overwhelmed even now. 

I just want to know what it feels like to fly again. To move freely. To move in harmony with my soul. To not have to hold back or calculate every move and every breath. To open my eyes in the morning without having to process what kind of day it's going to be. To run. To jump. To grow. To feel invincible again. To dance. To be a part of this world again.

And maybe that's it. That last one. I've never been the best at connecting with the rest of humanity. But I could build bridges. I've learned over these past several years that my energy--my essence and very life--is rooted in a sort of pervasive rhythm. This energy stems from feeling in harmony with everything around me, and that feeling only seems to arise when I am able to use my body and mind the way I desire. It is more than a desire. It's an absolute need. The rhythm has been disrupted, and everything else that follows from this central part of me has begun to unravel. I've been speaking in somewhat vague terms here. Let me step back.

My entire perception of the world changes when I am unable to do the things I love--to maintain this sense of wholeness via movement and rhythm. I am infinitely more anxious, less verbal, more introverted, less social, less functional, more depressed, less organized, more obsessive, and more sensitive to overstimulation. I feel like everything around and within me is chaos. I'm completely ungrounded. I feel without purpose most of the time, and I've been trapped in the same place this whole time. Groundhog Day. This has been going on for so long that I barely recognize myself anymore. I feel unbelievably alone in this world. It's hard to relate to others when you can't even relate to yourself. 

I lost the rest. But this is probably long enough. 









Tuesday, October 11, 2016

Coming Out V8.0

"Coming out trans felt like catching the ground.
Learning a dance all my own, learning that a dance
COULD be my own, and that a dance works best when
two bodies that know themselves move, and catch
each other in the groove." --Scott Turner Schofield

I hesitated about posting anything at all this year, yet I realize that this day is more important than it ever has been, not only given the current political and social climate, but also because this day represents my evolution as a human being: Each year since coming out for the first time in late 2008, my identity has evolved to encompass aspects of my being I could not know or accept in years prior.

I remember crying a lot that first time I came out. I remember the fear and the feeling that I had just lost the future I had planned for myself. But it was the first time I had looked into another person's eyes and felt the connection between our souls. It would be about another year before I could look into my own and see the same thing.

I've floated through as many identities as I have addresses over the past eight years. Femininity was something I used to fear expressing, feeling that it detracted from my own masculinity in some way--as if these binary extremes existed in opposition rather than in conjunction with one another. As if they were the only words that could describe the essence of a soul. Over time, I evolved from a straight tomboy to genderqueer (maybe) to transman to butch twink to definitely-not-a-twink to simply myself. If I had to place words on my experience, I would tell you that I am a queer autistic transman happily engaged to a cisgender gay man (though the identity crises and loss of trans visibility weren't always easy to handle). I'm also a bodybuilder and entertainer who has dealt with life-altering chronic pain, which may or may not have an identifiable cause or cure at this point. So, more on that.

That last bit--the pain--has been more difficult to handle than anything I've ever experienced. Some days, I wake up before the pain registers, thinking that this will be the day it all ends, the day I can begin to live as myself again. My experience of myself is deeply connected to my physical abilities and always has been. The dysphoria these days is rather different. I don't feel like myself at all. I feel like a stranger, like I'm viewing the world through glass and just can't break through to join the others. I've used the same words to describe my experiences with autism, and with being perceived as a woman. I've always suspected the intersection of these feelings, but the impact is more evident now than ever, when I feel more trapped by my body than I have ever been due to these limitations.

I've been told to give up looking for answers, when seven months ago I had begun to deadlift and incorporate basic plyometrics back into my workouts. Now, getting dressed is a stretch sometimes. Five years from now, I may be willing to call it quits on figuring this out. But today, I can come out as a queer autistic transman living with chronic pain. I can accept that reality, without accepting that these limitations must be permanent. I can accept where I am and still desire better from myself and the medical professionals from whom I have sought help.

I come out today to remind everyone out there living on the outskirts of "normal" that the beauty of these experiences far outweighs what anyone can say in an attempt to denounce your identity. I come out as someone who has been homeless (albeit briefly), who has lived in poverty, who has "failed", who has received inpatient mental health treatment more than half a dozen times, who continues to struggle every day. But I also come out as someone who has not given up, largely thanks to the support of those within my community, each of whom has their own equally complex coming out story to tell. Our stories connect us in a world determined to drive us apart. Our stories make it a little easier for others to tell their own, increasing our visibility, making us feel so much less alone, and ensuring that our voices do not remain silent when our very lives seem to be at stake.

Thank you for sticking with me until now, here and always. I love you.

Wednesday, September 28, 2016

Collection of thoughts on pain

No one will ever love you the way you used to love yourself. 
How do you become okay with being someone else? How do you convince someone that living like this is unacceptable to you, especially when that someone is a doctor who has told you to stop looking for an answer. 
This can't be forever. 
I don't want this future if it is. 
Will anyone blame me for that? 
They don't see the emptiness this has created. That nothing can fill that emptiness except being able to do things I enjoy again.
I told her I didn't see the point of trying if I couldn't do what I wanted to do ever again.
She walked out of the room. 

I can accept that I may have some level of pain forever, no matter the underlying cause. But as long as I can participate in my own life and tell my story the way I want it to be told, I can live with it. But walking around like a zombie--being able to look but never join in--is something that I can't handle. That's why I avoid people. They're all living in a world I can't be a part of anymore, and that is too painful for me to handle. 
I know myself, and I know exactly how this evaluation with the pain psychologist is going to go--because that was more important than trying any treatment to actual relieve the immediate pain that has reverted me from doing pretty much anything for weeks now. Not even a strong NSAID. Six months without medicine, other than Advil. Anyway,  going to be told something along the lines that I need to practice radical acceptance, that I need to accept that doctors cannot help me and that I am responsible for dealing with this (at which point I will remind them of all that I DO Do to prevent things from escalating), etc. Maybe I will also then mention that you can accept your situation while still actively working toward finding an answer. That no one has actually taken an MRI of the area that hurts--in which an anatomical deformity has recently been identified on an x-Ray. That they are focusing on the disc herniation that completely healed, which was associated with completely different pain and a better-than-full recovery. That the pain I have now developed quite gradually and continues to worsen over time, which is quite uncharacteristic of "chronic pain" with no identifiable cause. That based on the most recent movement tests conducted last week, the pain is probably not originating from the area of the disc herniation at All. 
I could go on. I could cite study after study. It gets tiring when no one seems to listen. "So, it's a sharp, shooting pain, you said?" "No, I said it wasn't like that at all, more than once." 
Stop projecting your generic image of a patient with chronic pain onto me for fuck's sake. Your generic PT probabbly won't be helpful either, as I guarantee that even as fucked up as I am, I have pushed through and can do more than most healthy people ever will in their lives. I know what you see when you read my charts and look at me--though you never even bothered to get the medical records from West Virginia. 
I feel that this approach is going to turn me into the very thing they already think I am. And I wonder for how many people such severe, lifelong pain issues could have been prevented. 
This heaviness is becoming too much to handle. I don't feel like myself anymore. And I know myself well enough to know that I can't just replace or forget about the things that allow me to feel like me. 
When I truly did accept that this was forever--when I stopped trying to find an answer--i spent a lot of time researching assisted suicide organizations in other countries. Because without the things that make me me--which also enable me to function socially, mentally, and otherwise--I'm already dead. I've tried to replace these things. I worked fucking hard to do it. I'm not interested in becoming someone else or in being so non-functional that I need to be heavily medicated like before. 
So I guess I'm trudging forward for the time being. But there is always that part of my mind that wonders how much more I can take. If this all goes the wrong way, how do you tell your own mother that you don't want this life anymore? That the gift she gave you has become a curse? That you are no longer yourself and can never be again? Do you think she would blame you? 

I'm not okay. And today has made things so much worse.