This is just an announcement that I added some stuff to my blog! For the longest time, the additional tabs were “ask me something,” “what it’s about,” and “glossary of janitorial words and phrases.” And that was it.
About two weeks ago, an outreach specialist who works for drugrehab.com reached out and asked if I would add their website. She wrote,
“Studies have shown that individuals in the LGBT community are more likely to use and abuse alcohol and drugs and tend to continue abuse throughout their lives. We work to spread awareness and to be an informational resource for those impacted by alcohol and drug dependence.
I believe that our website would be a valuable addition to your resources listed on your page. Would you please review our resource and consider adding it to your website to spread awareness”
And that got me thinking, because I don’t have anything like that on my blog! But I decided that I could – she kind of got me going to start organizing a resource page. I told her, “I’ll need to start from scratch because I have yet to provide a resource page at all, but I love the idea, so thanks for that push!” And then I started working.
I had always been of the mindset that although many blogs do have links to online safe spaces, hotlines, etc., I don’t need to be one of those blogs – people can google whatever they want to google and glean information from myriad places. I wouldn’t even know how to narrow down a page. Some, like Micah’s on Neutrois Nonsense, for example, are so comprehensive, I don’t really have anything to add!
So, mine might be a bit random, and it’s definitely not complete, by a long shot. I included the one for the drug rehab site first, since she was the one to get me going. I then added two overarching sites for mental health, Micah’s blog (of course!), the blog of a professional gender therapist who is very hands-on, and then two sites that are geared toward brainstorming and creativity, when it comes to gender.
You can take a look here: LGBTQIA-GSM Resources. Please lemme know if you want me to add anything in particular… (The GSM stands for “gender and sexual minorities,” because there are not enough letters in the alphabet to cover everyone!)
I’ll just end with a little more information about the drug rehab website, mostly because I was so tickled that they wrote and wanted me to “advertise” for them. It makes me feel like, wow, cool, my blog really is reaching people. (This is something that waxes and wanes for me, whether it’s really out there or not.) So, the outreach specialist said,
We are a free informational resource for those battling mental health and substance abuse issues. Our website tackles many issues currently facing society today. We have a team of doctors and writers who update our content daily.We do have a hotline that you can call with questions about different treatment options, as we know every individual is unique and so should treatment be as well.
I was in the hospital for psychiatric reasons, for a week in mid-May. It went so much smoother than my two other “stays.” (Those occurred in 1999 and 2015). I attribute that smoothness to:
– Having a complete social network around me for the first time in my life
– The fact that even though I had never been to THIS hospital, I was able to draw from my experience in 2015, and use that blueprint to (semi)-successfully navigate my way through, this time around.
– I was already on meds that were working pretty well, for the first time ever. This means that my psychiatrist wasn’t just taking a shot in the dark. She was just tweaking what was already working. (For me, specifically, this meant getting my Seroquel (anti-psychotic) increased from 200mg, to 600mg, dispersed into three 200mg doses throughout the day, and discontinuing the Wellbutrin (anti-depressant), at least for now.*
So, what were my priorities?
1. Getting on an adequate sleep schedule.
2. Eating the hospital food without having too many digestive issues (this included not relying too heavily on food visitors brought me, even though I was so grateful that they were doing this.)
3. Interacting as opposed to shutting down: Unless I was knocked out on meds, I was up and about, talking with people (sometimes shouting at them), pacing the halls (“going for a walk”), coloring with different medias and different methods / trying to do number puzzles (figuring out what was feeling more “right brained / left brained”), marking my turf / territory in ways that may have been specific to me (this, right here, would be a post unto itself… I’ll leave that for another day…
Some peripheral priorities / goals that I tackled / attempted and had some success with was:
1. Watching out for other people, checking in to see if they felt safe.
2. Micromanaging free-dance party / art times.
3. Getting other people condiments and other things they might need / want.
4. Modeling my behavior off of others / acting as a role model.
5. Pushing for Gym Time and Therapy Dog visits.
6. Reinforcing privacy vs. getting help. Also reinforcing quiet hours and other scheduled parts of the day.
7. Taking a shower every day (night) at the same time (10pm).
8. Dispensing important information.
I realize this post is a pretty vague sketch of some important things – this might serve as just an outline for me to fill in more interesting details / experiences / stories…
*I was also administered a shot, which I refer to as a “Haldol Cocktail.” 5 parts Haldol, 2 parts Ativan, 50 parts Benadryl. Plus, of course, my Testosterone shot – 50mg.
Oh, hey, dang, I’ve been absent for a while. I was in the hospital, again because I was manic (the time before that was January, 2015). This time it was a week: from May 15th-22nd. I’m currently out of work until June 19th. I’m sure once I’m feeling up to it, I’ll be writing a lot in the upcoming weeks. For now though, I’m thinking I’ll have a handful of short, somewhat abstract updates to this blog. The first one being:
I am a transgender person and I was hospitalized for mania and my blood was tested, and I was administered my testosterone shot, but my T-levels in my bloodstream were not monitored at any point in time during my stay.
I feel legitimately angry, like, about as angry as I am capable of getting, about this. Because I experienced some really really bizarre symptoms while there, that I would chalk up to hormonal issues, but there’s nothing for me to measure that against.
I was shouting A LOT. Like, I am not a shouter. I was SUPER vocal, the entire time I was there..
My menstrual cycle came back in a super condensed, concentrated form, for about 3 days…
Sex drive?? Zero
I called people out in their shit, in real time (generally something might occur to me later, what I should have said)…
I was actually able to keep my anxiety in check this time…
Smells and tastes were all over the place…
Blah! When will it sink in, that transgender people face different challenges, and these need monitoring too!
A couple of days ago, something suddenly dawned on me: It finally clicked why things weren’t looking too good in terms of symmetry. I previously had not paid attention, but my rib cage is actually fairly uneven. I’ve known that my hips are askew for forever – I have mild scoliosis. My waist is off – it goes straight down on the left side, and curves in on the right. We all have these little quirks… Other things: my eyes are not the same – one eyelid is droopier than the other. One nostril is a little bigger than the other. You know that swirl everyone has within their hair (cowlick)? It’s never dead center, is it? – It’s over to one side. Some people even have 2! My point is, we’re all a little different, even on a structural level. And I had been ignoring/avoiding my chest and rib cage – possibly because of the dysphoria surrounding that area.
I knew there was a weird dent on the left side, but beyond that, my ribs were pretty foreign to me. Recently, I started poking around. The bones are not in the same place, between my left and right! The left side even juts out a little further than the right.
Despite this, my breasts actually had been symmetrical, but that’s probably because there was all that extra tissue as a buffer. When the surgeon went to take that all out, bones were a hindrance as to what she could do, I’m finally realizing. (And yeah, I am actually that skinny that my ribs stick out a little bit. I wish I had some more meat on me there!)
I recently took some photos, so that finally, I could post my results on transbucket (you can check it out – you just have to create an account to access the website, first). And I found that things don’t look as bad, through the camera lens, as they do when I’m scrutinizing every little thing in the mirror. I had also taken photos of my chest, pre-op, and this was the first time I looked at those since surgery – my breasts seem a lot bigger than I remember them! Haha.
Here’s what I wrote on transbucket (a summary of sorts):
“Had surgery in June of 2016. Was reimbursed for 40% of the total cost, which I wasn’t expecting! This surgeon and her staff were subpar with patient care and availability. I have barely seen / spoken to Dr. Rumer during this process. All follow-up appts. (been doing them through Skype) have been with a physician’s assistant. The only other time to see her will be at the 1 year-follow-up.
I was not completely satisfied with the results (although these pics don’t look too bad). The left side is larger than the right, and the nipples are uneven, a little sunken in, and (at 6 months) purplish in color. It’s tough to see from the pics, but I believe some muscle tissue was taken out on the right side, and there’s a dent to the right of the nipple. Sensation is touchy, but slowly improving. I recently realized that my rib cage is not symmetrical, so that may have impacted my results.
I plan on seeking a nipple revision, at the least, in the future. Since I would have to pay more for this, from Dr. Rumer, I will be looking at options elsewhere as well.
At the time of surgery, I was not on T. I’d been on a super-low dose prior, for 2.5 years, but I do not think that impacted my musculature.
More information can be found at: https://janitorqueer.com/category/top-surgery/ ”
Here are past updates about top surgery, documenting as I go:
4.5 months after top surgery: 4.5 months is an odd point – but it seems worthwhile to write now, mostly because within the last couple of weeks, sensation has been returning at a faster rate. and I want to make note of that. …
3 months after top surgery: I did not expect to feel much different other than a cerebral satisfaction regarding being able to wear anything from now on. But it’s more of a gut- level confidence. …
1 month after top surgery: I can live with that for now, but I doubt things are going to change enough for it to actually look good. I’m not happy with the results. …
2 weeks after top surgery: Right now, there is not enough symmetry, in multiple regards. …
6 days after top surgery: Everything went smoothly, except for the fact that the surgeon was about to do the wrong procedure. …
I made a decision that I’d like to get on testosterone injections, temporarily. I’ve thought on-and-off about it for a while, and I think the idea solidified over the summer, like, once I’m back to normal after recovering from surgery, I’m going to look into it. Unfortunately I knew I couldn’t just get this from my Primary Care Physician – she had been OK with maintaining my androgel dosage, but not comfortable with changing / increasing anything.
On September 26, I called the local LGBTQ+ health clinic and explained what I’m looking for. They said they could get me in on January 25th. I said, OK set the appointment, but in my head, I was thinking, this is a ridiculous amount of time to wait. (And, I know, I know, relatively speaking, it’s not at all, especially looking at it from a global perspective. But, if I think I can do better than that, why not try?)
From there, I looked up endocrinologists in my area and what types of care they covered. I found one that hypothetically seemed like a good fit, and I posted about it on the local transmen Facebook page. I got one comment that yeah, she and her staff are good, and a few more comments agreeing with the inefficiency of the clinic. In terms of vetting, that seemed good enough.
I called her office on September 27th and was told I’ll need a referral from my Primary Care Physician, and then once that’s in, I should hear back within a week. I called my PCP’s office, and they said they’d send that over right away. I then waited 10 days before calling. I was told the referral didn’t get received, huh, not sure, can you have them send it again? Got that done, this time with a confirmation plus I got a copy, and waited another few days. I got a call from my PCP’s office, saying that the endo needs an additional referral, from a psychiatrist. GATEKEEPING at its finest. I would have been super pissed, and probably would have stopped trying to go this route, if it weren’t for the fact that I actually do have a psychiatrist right now. So although I hate that I had to do it, it wasn’t actually much of a hassle.
I emailed my psychiatrist (she was already aware that I was pursuing this), summarized the nature of the referral from my PCP, and asked her to also write a letter. I said that including pertinent information, like the fact that I’ve been on a low dose before, that I’ve had top surgery, and/or that I identify as non-binary would be great. She replied that she could write the dates she’s seen my, my diagnosis (meaning my mental health diagnosis), medications she prescribes, and mental stability status. “OK?”
I replied, “OK that’d be great, thanks.” Guess I didn’t want to argue or push it.
I then waited another 8 days (by this point, it was Oct. 25th, a whole month later and I still hadn’t secured an appt.) and called the endo’s office again. I was given a wishy-washy answer by the administrative assistant. That the endo is still in the process of finding more information, and she is currently booking out till January – they can get me in for January 10th. But at the same time, she can put me on a waiting list to get me in sooner. I asked, if I were to call and check my status, would that help me “jump the line”? (I didn’t actually use this phrase.) She implied that sure, that could help.
At this point, I took a step back and thought about what’s happening. So far, the endo got a referral from my PCP, and that didn’t include any history of care: just Female to Male transgender person (F64.1), chronic. In addition, they got information from a psychiatrist that I am bipolar, that I have been seeing her for 9 months, and that I’ve been stable during that time (relatively, this is such a short amount of time; it’s kind of implying that the rest of my “bipolar disorder” time is a wildcard.) I don’t want to get too paranoid, but this collection of information is not working for me at all. That plus the fact that it’s straight up inaccurate.
Feeling like the system is working against me, I decided to pull from my bag of tricks and email my therapist. If there’s anything that could help this stalemate, it’d be her. I relayed this whole series of events and asked her if she could also write a referral, actually filling in the background information. She replied in 10 MINUTES – such a refreshing change! and said crazy that this is so hard, and sure she’d write a letter, and is there anything else I’d want to make sure she includes?
So she’s writing a letter. My intent is, essentially, that this is not a new diagnosis, coming out of nowhere. That I’ve already been on T in the past, I’ve had top surgery, I’m in the process of legally changing my name, etc. So, this should be a continuation of ongoing care (timely, please!). I’m not starting from square one here. I imagine this endo has access of my medical records (?? not sure how that works), so if she looked into it, she’d find this stuff. I’m just having my therapist bring it to the forefront, which will hopefully change something?
Because, I feel like if it went the other way – my doctor sending the referral first on my behalf, instead of me going backwards to get this stuff covered, I would have been given an appointment within a more reasonable window. Not sure if that’d be true or not – there could be dozens of reasons outside of my control – maybe she’s just really busy. But, I gotta try…
4.5 months is an odd point – but it seems worthwhile to write now, mostly because within the last couple of weeks, sensation has been returning at a faster rate. and I want to make note of that.
I was really afraid I was going to be left with a huge amount of sensation lost permanently. That’s definitely what it felt like for a while. Despite being fully aware that it takes months, years even, for nerves to come back in fully, or to the extent that they are going to.
It was just really uncomfortable to have something touching anywhere around my chest, because of the not feeling of the thing. I didn’t even really want to be touching it myself, but I did / do, every day, to massage the areas around the areolas. I worried about carrying boxes when I came back to work, but that actually was fine; I’m not using my chest as a balancing point as much as I thought I did – it’s more abs, I think.
Earlier, I’d say that there was numbness for about an inch radius around each nipple. And it seemed to stagnate there, for a long time. Now, I have feeling everywhere except the nipples. Is it the same kind of feeling as before? Not quite, at least not yet, on the right side especially. Light touch feels normal; pressure still feels tender in a lot of spots. I’m super happy about this progress.
Something else that is slowly changing, I’d say, is my overall expectation. I’m still not happy with the results, and I’m sure I will eventually get a revision (nipple revisions if nothing else). But it isn’t something that bothers me. I’d say I went through a week (OK maybe 10 days) of being really down and disappointed, early on. After that, it felt like, OK, it’s actually good enough, for now, so no need to keep harping on it.
I got a lot of feedback that it’d be best if I just lowered my expectations about how good it could look. Many cis-people have weird chests, many trans-people have botched chests. I had mixed feelings:
– I’m totally grateful for how it is, as opposed to how it was. I am continuously happy about it, every day. Can I be happy about it and still want it to be better? Definitely. It can be tough not to compare it to other chests I’ve seen, but, in general I’ve just been comparing it to how it was. And in that regard, I’m psyched.
– It’s true that many people end up with really bad results. And I feel angry about that, like, why aren’t the standards better yet?? But, I know nothing about it, from an anatomical perspective, and I’m sure there are so many factors that go into how well it can be executed, beyond what we commonly know about.
– I saw a lot of shirtless men this summer, and paid a lot more attention than I used to. Many men have chests that are not quite desirable, but every one was symmetrical. I know it’s common for women to have one breast bigger or shaped differently from the other, but I gotta say, I’ve never seen an asymmetrical cis-male chest.
Overall, I think it helps to hear that adjusting your expectation will help in the long run (even if the knee jerk reaction is something along the lines of, “butt out!” Haha.) I strongly believe this is happening naturally, without me trying to change the way I am thinking.
I thought that since my chest was so small, it would be easy to get it right. Now I’m thinking, whoa, no, it’s way more complicated than that, and I barely know the first thing about it.
What I do know is that my surgeon does not offer free revisions (although the cost I was quoted, more or less, seems reasonable). Also I know it is not a priority for the foreseeable future. I imagine that within a year or two, I will have consulted with a few surgeons (I’d definitely hesitate to go back to my original surgeon) and I’ll be moving forward from there. I’m in no hurry.
I recently connected with Nic and Cat, a duo based in Philadelphia, who have been working super hard for about a year, creating an app for anyone who is LGBTQ+ and is looking for a health care provider. It will be simple, straightforward, user-based, and reliable. A beta version will be available soon, and Nic says, “the more the merrier, because once we’re beta testing we want to have as many reviews on there as possible–that’s what’s gonna make the app useful.”
I already signed up. You can too! At: https://qspacesapp.com/qreview/
I definitely will have a lot to add, from
The first primary care doctor who proscribed me T,
The terrible consultation I had for top surgery in my area,
and, yeah, there will be much more. I have thoughts on my current doctor. Thoughts about the surgeon who did do my top surgery. Thoughts about my sometimes therapist and my psychiatrist (refreshingly, those two are all positive.)
I asked Nic a few questions to get a better sense of who they are and what their project is all about…
K: I’m curious, do you and Cat have experience in web design? Or, what are your backgrounds?
K: Was there a specific moment or incident where you said, “We need an app to fill in this void of information.”
Physically, I feel 100%, and I’ve felt that good for the past month – like in terms of lifting, stretching, and moving my body. Aesthetically, I’m still not happy, but I’m starting to get used to / feel OK (for now!) with how things look (I’m sure I’ll be looking at revisions down the road, but I’m not going to worry about that right now.) Sensation-wise, I’m a little worried, but I know it’s still early on. My nipples are still numb, and it feels numb/tender within about an inch radius around both nipples. I’m looking into making some gotu kola oil to massage into the tissue; apparently that’s supposed to help with nerve damage. Better late than never, right?
I have my 3 month follow-up appointment with the physician’s assistant on Tuesday, via Skype, and I’m not really looking forward to that…
It’ll be fine…
Otherwise, I’m super happy. I’m so happy to be wearing what I want to wear and also of walking around the house without a shirt on (which I did do, previously, but not as much, and not while my spouse was around.) A couple of weeks ago, I wrote to a friend, “I did not expect to feel much different other than a cerebral satisfaction regarding being able to wear anything from now on. But it’s more of a gut- level confidence: I feel like my posture is different; I walk differently, I carry myself differently. This is what makes it all worth it.” That pretty much sums it up.
Also, I’ve been using 2 pumps of Androgel, daily, for 6 weeks now, without any doctor supervision. I just had some extra bottles laying around, and I felt like starting again (after being off of it for… 6 months?) I contacted my local LGBTQ clinic via email (which is new for me – previously I’d been getting Androgel from a doctor who was reluctant to be a part of my trans-related health) but after more than a week, I haven’t gotten a response. So, I plan to call soon. I’m thinking about trying injections, short term. I think I’ve gotten about as far as the gel will bring me, and I STILL want to look and sound slightly more masculine. Like, enough so, so that people are confused, or at least they’re hesitant to actually say “ladies.” So sick of the “ladies.” It happened again today. Blah.
The title says it all, but here’s the details: Prior to surgery, I put a lot of effort into trying to figure out what I might be able to get reimbursed for. I was on the phone with customer service for a long time one day; I scoured my insurance’s webpage; I tried to figure out codes and what they mean; my therapist called multiple times on my behalf. I oscillated between feeling hopeful I might get partial coverage, and being convinced that there was no chance.
Ultimately it seemed like there was no chance. I found a promising document at one point called, “Gender Reassignment Surgery Medical Policy,” followed by criteria to prove it is medically necessary. Then I was told that that applies to some insurance policies with my insurance company, but my particular policy excludes this coverage, and that was the bottom line.
Still, people told me that it’s against the law to deny coverage, on a state by state basis, and my state should cover it. I paid out of pocket, first for the surgeon’s fees in advance, and then for the surgical center, the day of. After the fact, I asked my surgeon’s office to send me an itemized bill of what I’d paid for, and I submitted that to my insurance company, without much hope. I figured it’d get denied, then I’d appeal and take it as far as I could. Maybe I’d get some advice from my local gay alliance, etc.
About 2 weeks later, I got a piece of mail. I didn’t open it because I didn’t care to read the bad news. My spouse and I were leaving for vacation last Wednesday, and I figured I’d better open it before we left. In case there was some deadline for appealing it. I opened it up, and it was a check for $2,800.09!!!! I yelled at my partner about it, the excitement of it, which must have been jarring because I almost never yell. What an amazing way to start our trip!
That’s 47% of the surgeon’s fees (including 100% of the accommodations – staying at the surgeon’s guest room!) I really could not believe it – either the person on the receiving end wasn’t paying attention at all, or they knew exactly what it was and had some strong personal beliefs of what should get to be covered!!
Now I’m just deciding if I should also get an itemized bill from the surgical center and try to get more money back… Maybe I don’t want to push my luck…
It really paid off to just try, even though I didn’t believe anything would come of it!
Here’s a post I wrote earlier on this topic:
In February, I wrote GID: exclusion for top surgery coverage
My spouse and I are leaving shortly, to drive down and arrive by mid-afternoon, to then get ready for surgery in the morning. I hope. I’m saying, “I hope,” because I came down with a cold 3 days ago, and I still feel stuffed up. I’ve searched the internet for, “Can I get surgery if I have a cold?” and there really is no consensus. It’s a good sign that I don’t have a fever, and I don’t have a cough. But ultimately, it’s up to the surgeon. It feels like I have a 50/50 shot here.
And I haven’t been able to get in touch with their office any earlier because of the holiday weekend (I did email a heads up though), so I’m going to have to call while on the road, once their office is open… When I call, I am going to act as though everything is proceeding like normal, just want to let them know about this development. Because I really really really just want this to happen. Tomorrow. And I don’t know what I’m going to feel if I’m told, “Don’t bother coming. …We can schedule you for the last week of June.” Or something like that.
Between this and shingles, it feels like my body is trying to say, “this is not happening.” I’m angry with my body. I was so super careful – eating well, sleeping well, I don’t recall being around anyone who was sick… I wasn’t even feeling stressed or anxious. And this is super strange for me too – I don’t generally get sick often. I used to, but not anymore. I don’t get headaches. I don’t get queezy. I don’t throw up easily. So what’s with the shingles (which have thankfully cleared up in time) and the cold?!?
I currently don’t feel stressed about the surgery. I feel ready. I feel stressed about the cold, but not about the surgery.
So, I guess I’ll know what’s happening within a few hours. Let’s hope next time I write, it’ll be good news!!!