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isolation and how it fits into the puzzle of my life

As a disabled person I’ve experienced isolation throughout my whole life, and I thought I’d chronicle it here so that people can understand why the corona virus has offered opportunities to disabled people, trans people, and other marginalized people. This post is not to say others are struggling, and I realize my privilege in even being able to discuss this in a blog post.

Starting after birth I had to experience many eye surgeries. While I might have not remembered them throughout the early years, I certainly remembered them as a young kid. As a 4-year-old I remember the insane amount of surgeries, doctors’ appointments, and days where I could not leave dark rooms. As a 4-year-old I should have been in a school as much as possible interacting with my peers and learning how to be a kid. In stead of learning these things I was stuck at home. This I believe is my first example of isolation I have experienced in my life., and this was the first step for training to be able to cope with the isolation that has resulted from the corona virus.

Later, at about age 9 or 10 I started getting headaches and other odd medical issues. Imagine being a young kid who did not know what was wrong with my body but knew that something was wrong. Meanwhile my parents believed me, and supported me while the medical system failed me by misdiagnosing me, brushing it off by using minimization techniques, telling me that it was all in my head, or even telling me that I’d have to live with it for the rest of my life. Because of all these medical struggles I spent a ton of time at home. This isolated me from kids my age and made me turn to the virtual world for comfort, knowledge, friendship, and hope. As a kid I remember talking to friends on the telephone learning all I could about old versions of windows, Windows server stuff, and general technology information that I could get my hands on. all of this prepared me to be able to use technology to maintain connection, and to continue my life. Even today I call back the knowledge I learned from those days, and use it to help me connect with others, comfort others, and offer help to people that need it. This isolation continued further into my childhood and into my early teen aged years. with chronic back pain, headaches, and an eye going bad.

After my teen aged years started my parents got a wonderful call to go to Australia. When we got this call my parents did a ton of research, and some how worked a miracle and got me set up with a good education assistant that was visually impaired herself, and also was very proficient at converting print materials into something that I could read. This really should have been an amazing combination and people reading this might have thought the isolation would have stopped by now, but of course it didn’t because I was blessed by a wonderful body that likes to throw curve balls frequently. In around 2012 the lovely thing that happens to all bodies happened to me. I hit puberty, and testosterone levels rise bringing on ugly depression that I hid by learning Linux command line and talking to nerdy people that could inspire me to keep going forward in my life. During all the tech stuff I always had raging depression and anxiety because my body was doing everything that I did not want it to. As a very young child I had known I was trans, but had no idea how to explain it, and did not have people in my life that would discuss trans gender people. As a scared teenager I tried to turn to mainstream media and could not find any positive material on trans people. As a trans woman in the closet I always saw trans people being portrayed as monsters and sex workers through mainstream content. This yet again caused me to turn to the internet and learn about trans people from content that was backed up by medical professionals and from stories from real life trans people that were working jobs that were really interesting to me. This gave me hope but did not give me confidence that I could come out safely while living in a house with people that were not knowledgeable about trans issues.

Starting in 2014 I made the choice to reduce my high school work, and attend certificate 3 in information technology, digital media (network administration track). This only gave me access to more nerdy people, and the ability to get my hands-on professional grade servers, routers, switches, and storage technologies. While I did not make many friends with students in my class, I did make friends with the instructor, books about Windows server, Books about Cisco, and lab materials posted on tech learning websites. This was a boom for my mental health because I was in the perfect environment and could reach for things that I could understand and succeed in. This continued through 2015, and even resulted in an assistive technology training job as well as a lot more payed tech work. the only thing that happened during the next year and a half socially was meeting a couple of people who turned out to not talk to me after a year of being back in the states, and a lot of nerdy tech fun by myself that resulted in more geekery excitement.

After moving back to the United states my health started crashing and caused me to really become isolated. After arriving back in Houston, I decided on attending Blind Inc. in Minneapolis. This required me taking on the state and required lots of stressful phone calls, emails, and in person meetings. As time progressed, I started not holding food down as well and engaged a GI doctor that misdiagnosed me with acid reflux and put me on a proton pump inhibiter. This did help a tiny bit and allowed my throat to heal up some from all the reappearances that food seemed to like to make on a regular basis. After moving to Minnesota, the weather started to cool off bringing me more pain throughout my whole body. This made me get extremely angry and not take advantage of the opportunities that were afforded to me by the state of Texas. This program wasn’t sustainable for me and I eventually quit, got an apartment, obtained my GED, obtained mental health help that wasn’t helpful because I wasn’t ready to talk about the trans issues that were at the route of my mental health issues. When I look back I realize that if I had talked about them I could have actually saved myself from more mental torture, but couldn’t because I didn’t have support from people that were open to anything and could give me practical advice on how to start presenting as female. This lack of connection was caused by isolation and by societal expectations that men did not hang out with women unless there was some romantic thing going on.

In 2018 I finally decided to come out and started hormone replacement therapy shortly after this. This change gave me a new lease on life, and allowed me to have a few months of energy that allowed me to meet people that ended up drifting out of my life because of the enormous  amounts of pain I experienced on a daily basis that caused me to have to sleep quite a bit and caused me to be an angry person that lashed out for no reason. During this isolation, my dog brought me peace, and tech fell by the wayside because my brain was constantly in a fog from being in constant pain. During these months I was able to start presenting as female, started laser hair removal, and got myself to a point where I will be able to get gender confirmation surgery. These few months of energy provided by hormone replacement therapy euphoria put me into a position where I can transition fully thankfully.

The next few years was full of medical issues, and isolation because we could not get reductions in pain and other symptoms. This ended up training me on how to function from home and allowed me to learn how to keep myself emotionally stable during times I could not leave the house. As a disabled person this made me bitter that I couldn’t find work or connection that could accommodate my disabilities, and would crave the ability to meet in conferences online, virtual card games, internet relay chat, one on one calls, and other forms of connection that I could do from bed. When covid19 hit I did not know how I would respond and was pretty sure I could not get access to my testosterone blocker because of the medical system overload that could occur. This luckily did not happen, and I have continued receiving hormone care. Funnily enough my response has been quite calm and has mostly been positive. When social distancing was called for I started making a huge effort to bring people together digitally and made sure I reached out to people using text communications to keep my spirits up and hopefully give other peoples spirits a lift. This has now ended up in some wonderful friendships that I foresee continuing on for a life time and will probably end up providing me connection that I would have never had if the virus hadn’t changed society in such drastic ways in such a short time.

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a drone, a dog, and some updates

I know I know. I’ve not updated my blog in a long time. This is partially because of writers block, partially because I’ve been in a lot of pain, and partially because the American Council of the Blind convention is two days from now. Unfortunately we haven’t seen any improvements using pregabalin and I’m starting to wonder if the medication is an effective treatment for my case of fibromyalgia. On the bright side I’ve been doing a very intense regiment of acupuncture and see some pain reduction for about a day and a half. Unfortunately this is not good enough to fully function in society and we really need to look for a better treatment protocol. In better news I’ve decided last minute to run for vice president of blind pride international so I’m looking forward to seeing how that goes.

I’m considering putting something amusing from my life in my blog posts and want your responses to this section in my blog. Yesterday as I was walking around my neighborhood I started noticing something that sounded like a drone buzzing very close to my dogs head. In my ever abounding wisdom I decided to think nothing of it and let the stupidity pass. 10 to 15 seconds later I proceeded to notice that the drone noise was gone and my dog was acting like nothing happened. I then quickly thought we were all good and the person being idiotic with the drone had wizened up. This turned out to not be the case, and I guess the world had to bless me with comedy gold to brighten my day. I then got notified by the drone user that my dog had actually caught the drone in his mouth mid flight and that the propeller broke during the epic catch. This is proof that service dogs are not robots, and also is one of the many reasons I work a service dog on a daily basis.

I guess this is a transition related blog so I better give you all an update on my transition.  Today I’ll be receiving required laser treatment so that I can receive gender confirmation surgery sometime next year. Getting this surgery is a really important piece of my transition because my bottom dysphoria is gradually getting worse and really needs to be solved as soon as possible. While I think every piece of transition related care is important I think gender confirmation surgery and hormones are the most important piece of my transition because my face doesn’t particularly bother me. It’s not like I have to physically see my face’s details in the mirror every day. After bottom surgery I’m sure I’ll still have gender dysphoria, but I know deep down the bottom dysphoria causes most of my anxiety.

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updates a year and 2 months into transition

updates

Hello blog land. I’m sorry I’ve not posted in a while. My transition has been going well but has hit some weird hitches along the way. Last October my stomach issues got a lot worse, and I managed to lose 30lb in 3 months. This was a good and a bad thing. It was good because I could always use to lose some weight but was not great because I lost the weight in an unhealthy way. In January my doctor and I made the decision to switch me from spironolactone to monthly Lupron injection’s. This has seemed to help the stomach issues but didn’t help with the chronic pain I’ve experienced for a long time. Unfortunately, the fibromyalgia pain has made it very hard to go out and do stuff. This is unfortunate because I was excited to go through college and hopefully get a job after obtaining my associate degree. My doctor and I are trying some medications to help with the fibromyalgia pain but haven’t found anything that has worked as of yet. In happier news I got to meet the surgeon that is going to do my bottom surgery on March 12th. He is a very kind man and I look forward to working with him more. The surgeon gave me a long list of things to do including a year of laser hair removal, and a consultation with the urologist that will be joining the gender confirmation surgeon during the operation. In other transition news I’ve been able to go out and pass without trying. This is nice because it used to take a lot of work to pass. Now I can throw on some sweats and a shirt and go outside without the fear of being misgendered. I’m sorry for the long delay in posts but am hoping to make these more of a thing. I’m finding that writing is a good coping mechanism for my fibromyalgia pain and hope that I can turn my dribbles I write in my journal into good blog posts. If anything, I might talk about my fibromyalgia journey, and hopefully will give my dear readers a look into life with fibromyalgia.

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first month on hormones

When I started taking the first doses of hormones I became very emotional. Not because of the new hormones being introduced into my body, but because I was beginning the path to living my authentic life. These emotions had their ups and downs. The ups out weighed the downs, but when I felt down it wasn’t because I wasn’t making the right choice. It was because I had to deal with little things like people using the wrong gender, the wrong name, and the wrong pronouns. I think the worst experiences came when I had to deal with social services such as social security and the county office. They unfortunately don’t have a place in their systems to mark preferred pronouns and preferred names so no matter how many people I explained it to it didn’t get fixed. This needs to change so that gender nonconforming people don’t feel uncomfortable when accessing these vital services that can mean the difference between homelessness and being in a safe place.

During the first month of hormones I remember saying to my friends and family that it felt like a cloud had started to lift from my brain. I used the word cloud to describe it because before hormones I had to deal with extreme depression and anxiety caused by my gender dysphoria. When I went out after being on hormones for a month I started confidently correcting people on gender pronouns, and started to insure that friends and family called me by my proper name and used the correct pronouns.

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Getting Hormones

Dear blog world,

When I walked into my appointment at the gender and sexual health clinic on February 21, 2018 I had no idea what to expect but was welcomed with open arms.

When I was called back the nurses checked my vital signs and talked about my gender dysphoria with me. They then insured me that I had come to the right place, and that I would be given all my options and would be treated with the utmost respect.

After my vital signs were taken a lovely doctor walked in and asked a bunch of questions to officially diagnose me with gender dysphoria. Once she was 100% sure that was what was truly plaguing me she discussed my options for hormones and made sure that I knew that I could change delivery vectors, or even stop them if I ended up not liking the results.

After discussing my options for about 45 minutes we determined that 2mg of estrogen, and 50mg of a testosterone blocker would be a good starting point.

When I got out of the hospital I had the stupidest grin on my face because I knew the end to my extreme mental pain was getting resolved.

Love and peace from Amena

 

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the beginning

Dear the blog community,

It’s been a long time coming for me to build up the confidence to write about my coming out journey as a trans woman and what I’ve done so far to live my authentic life. August of 2017 my amazing friend came in for a visit, and we started having a heart-to-heart conversation about life. When we were laying by each other I explained that I never felt right in the body I was born in, and that I know that I’m a trans woman. She totally understood what I was going through and encouraged me to go to my therapist appointment that afternoon and discuss the issues that had been destroying me for over a decade and a half.

When I got back from therapy I felt like a huge weight had been lifted off my shoulders, but still didn’t know what to do. After this meeting things kind of stagnated, and I filled my life up with getting my guide dog Ivan, college stuff, and generally ignored that I needed to go get medical help for my transition.

When I started school in January I felt like crap, and didn’t feel I was ready, but knew I had to do college just to appease my family, friends, and state services for the blind. After the second week of college my mental health and my zest for life was completely gone, and I knew I had to check myself into the hospital for my own safety.

When I checked in I explained my main issues, and I discussed that I absolutely needed to leave the hospital with a plan. This plan would include an appointment with the gender and sexual health clinic so that I could start hormones, connections to trans support groups, and a plan to have my friends by my side while I came out to the world.

The day after I got released from the hospital I gathered my friends around me, and we developed a plan for me to come out. The main fears that I had were that my family would disown me, and that I’d become homeless. In the end none of this happened, and my relationship with my family became more authentic and became a way more loving situation.

love and peace from Amena