Accidental Fudge

Updates Thursdays

Tag: healthcare

On Being a Burden

Yesterday was a rough news day here in the US, particularly for those of us who are trans, as we learned of 45’s intention to ban transgender people from serving in the military, ostensibly because our healthcare costs are too much of a burden.

First off, this is bullshit for a lot of reasons. 45 spends more on his trips to Mar-A-Lago than the military would spend on trans healthcare. The military spent ten times more on Viagra in 2014 than the high end of estimates of what healthcare for trans service members would cost. Estimating generously, trans healthcare would take up, at most 0.14% of the military’s healthcare budget. (Teen Vogue, who are delightfully leading the charge in the media revolution, aggregated some of this great info [which I also saw several other places] here.)

I’ll be honest: I think we spend entirely too much money on the military (or at least that we spend the money in the wrong way, when we focus on warmongering rather than caring for veterans in the aftermath of what we’ve put them through). But I’m afraid for the 10,000+ trans folks currently serving in the military. I’m afraid for trans veterans. And I’m afraid for trans folks in general, military aside. 

Because, here’s the thing: arguing that trans healthcare is too much of a burden for the bloated military budget to handle is only a short hop away from arguing that trans healthcare is too costly, period. As we watch Congress attempt to systematically dismantle the ACA and take healthcare away from millions of Americans, it’s not hard to imagine the GOP using this as a further selling point with their base. Because of the systemic oppression faced by trans people (particularly trans people of color), trans folks already often struggle to obtain and afford affirming healthcare. This is only going to make it harder. 

Trans people are not a burden. Treating us as human beings and affirming our identities is not a burden. But as I look at 45 and his fear- and hate-mongering, I find myself wishing that I could be a burden on his conscience. Sadly, to do that, he would need a conscience.

Adjusting

I am going to be honest: I really want to write something happy this week, but I’m really not feeling it.

I have dealt with chronic pain for years, but have never brought it up to a medical professional (or much of anyone, really) before, for a variety of reasons. I went to the doctor on Saturday (luckily, my insurance card finally made it to me on Friday) with the intention of changing this, because it’s been getting steadily worse, and is starting to affect my quality of life in ways I’m not okay with.

Long story short, I spent three days waiting to hear back about lab results, wrestling with the fact that I’m probably looking at either rheumatoid arthritis or fibromyalgia – in other words, a thing with pretty straightforward treatment options that will probably be increasingly debilitating as time goes on, or a thing that is super nebulous and hard to treat that’s debilitating in different ways.

I finally got the call from the nurse on my way home from work yesterday – these initial lab results were nothing definitive, but they weren’t normal and indicated the possibility of RA, which means I now need to schedule some further tests with a rheumatologist. And whether it’s the weather this week or the fact that I’ve been actually acknowledging that pain is happening recently, I’ve been in more noticeable amounts of pain all week. So now I am grouchy, and anxious, and generally struggling to focus on much of anything else, even though I realize there’s nothing I can really do about it right now.

Hopefully next week I’ll have more of an action plan together and will be up for writing something more profound or happy or, at least, less “woe is me”. For now, though, I’m going to give myself time to adjust to the fact that pursuing a diagnosis for whatever-this-is might illuminate the best way to deal with it, but it also means it’s real, and this is a reality I’ve been ignoring for a while.

Faulty Coping Mechanisms

Sometimes (and this should come as a surprise to no one)…I make mistakes.

I knew, all through last week and most of the week before, that I was starting to run low on my medications. I put off sending in the refill request, because my new insurance card hadn’t come in the mail yet. Last Thursday morning, I took the last pills I had. My insurance card still hadn’t come, but I didn’t really have a choice; I put in the refill request.

Unfortunately, my insurance card continued to not show up, and the pharmacy didn’t get going on the refill right away, and I was feeling very overwhelmed and low on spoons and doing a terrible job of expressing to my partner what was happening, and, long story short, I had no meds over the weekend.

I’ve been on the same duo of medications for six years. There have been times when I’ve run out of one or the other (never both at once), or missed a day, but neither of those things have happened often, and neither have happened at all in probably two years. I had no idea what to expect. I assumed that I had a day or two, at least, before it really started working its way out of my system, but beyond that? Not a clue.

I felt increasingly off as the weekend progressed. I finally told my partner what was happening on Sunday. Monday morning I overslept  (in part because it was stormy and so dark outside that I think my brain decided it couldn’t possibly be day, and I turned off all but my last alarm in my sleep), which meant that I was already not in the best place when I got to work. A few hours into my day, I realized I was feeling pretty shaky. I started sweating profusely. My head hurt. It gradually dawned on me that the withdrawal had finally hit.

I logged into my pharmacy’s online portal and saw that the one medication that was most likely causing the worst of the withdrawals had been filled, and my old insurance had covered it (I’d forgotten that I submitted a refill request when I got a reminder email from the pharmacy a month prior, then realized that, because I only take half a pill per day, I didn’t actually need it yet, and had never picked it up). I decided I’d head to the pharmacy after work and at least pick that one up.

I ended up leaving work around lunchtime, because I realized that the withdrawal symptoms were only going to get worse, and headed straight to the pharmacy, feeling increasingly desperate.

As it turned out, even though I didn’t have my new insurance information, I was able to use a clinic discount to get my other medication at a reasonable price as well. I tried not to beat myself up too much as I headed home with the medications I probably could have picked up over the weekend, before things got out of hand.

Thankfully, in the midst of getting my brain back on track, I’ve had plenty of folks around to help me keep moving. A friend invited me to join a weekly roleplaying game, which meant I got to spend a good chunk of Monday and Tuesday coming up with character ideas. Tuesday evening was the game, and there’s nothing quite like several hours of collaborative storytelling to get you out of your own head. Work has been especially busy, which has been challenging, but has also provided a really good gauge of how quickly my mental state is improving – I felt so much more capable of focusing and getting work done yesterday than I did on Monday, which was encouraging.

I’m still waiting for my insurance card to show up, but now HR is aware that there’s a problem and is working on rectifying it. I’m making myself a list of appointments I need to schedule when it finally gets here (and I’m hoping it comes before the appointment I have scheduled for this weekend). Finding a therapist to help me work through some of the underlying emotional things that are siphoning off my supply of spoons is at the top of the list. I am not letting myself get back into the position I was in at the beginning of the week every again, if I can help it.

Here’s to finding new and more reliably effective coping mechanisms.

Fighting Frustration

It’s 10pm Wednesday and I’m finally cranking out a blog post for this week. I’ve been trying all day to come up with something write about, but I’ve been largely unsuccessful – it was an immensely frustrating day at work, in ways that my job is not usually frustrating. I am torn between a desire to bitch about my day (which is something I promised myself I wouldn’t do often, back when I started Accidental Fudge), and a desire to put something positive out into the universe (which is a challenge today, because it’s been so frustrating).

I’m going to err on the side of positivity, though, in the hopes that it’ll set me up for a better day tomorrow. So here are three things I’m looking forward to as we launch ourselves into July:

  1. Three day weekend! Particularly in light of how frustrated my Wednesday was, I am super excited to have an extra day to myself this weekend. I’m planning to get together with a friend in the afternoon on Friday, but the morning will be me hanging out around the apartment, at this point without much of an agenda – there are some creative projects I could work on, or I might read…I’m going to try to resist the urge to sleep it all away.
  2. New (and hopefully better) health insurance! I decided last month to switch my insurance plan from a HMO to a PPO, and that kicked in as of July 1. The major thing I’m excited about is being able to go to specialists without needing to get referrals. I want to be more intentional about dealing with mental health stuff and am going to seriously pursue therapy now that I know my insurance will cover it. I’m also (finally) going to talk to my doctor about the chronic pain I’ve been dealing with for…well, years, and I’m glad I’ll have the freedom to choose a specialist in whatever field my doctor suggests, instead of being locked into one medical system.
  3. A less hectic schedule! This is the first time in two years that I’m not taking any classes at the Old Town School of Folk Music. It’s weird, but I think it’ll be good – I’ll have more time at home to work on projects (read: major reorganizing) we’re working on, and won’t have to ration my spoons as much if I’m not being as social. And I still have my weekly volunteering gig in the school’s Resource Center, so it’s not like I’ve cut the place out of my life entirely for the next couple of months.

Another Week in a Five-Item List

Sorry for the late post today, folks; it’s been a bit of a nutty week, and I kind of lost track of what day it was.

  1. New England was great. The weather was beautiful, the scenery was lovely, I bought some gorgeous local yarn, I got to eat a lobster for the first time in my life, and I checked three new states off my list of places I’ve visited. There were a few hiccups along the way (including a horrifying moment where I brushed something off my cheek only to discover that IT WAS A JUMPING SPIDER), but for the most part, it was a really nice weekend away.
  2. I’m pretty annoyed with my country right now. Yeah, tomorrow is Independence Day and patriotism abounds, but the recent SCOTUS decisions allowing corporations to deny women’s health coverage on religious grounds and overturning the abortion clinic buffer zone law in Massachusetts are beyond maddening. The Hobby Lobby case in particular is causing all sorts of problems, and is going to keep causing them: If a corporation can deny health coverage on religious grounds, it’s not a great leap to allow them to discriminate against certain groups of people in their hiring practices, either.
  3. Aside from that frustration, though, I’m getting back to a better mental place. I’m still on the low end of this Bipolar cycle, but I’m not struggling as much to focus as I was last week. I feel like I’m actually accomplishing things at work. Things feel a little less hopeless than they did two weeks ago.
  4. On Monday, there were some pretty outrageous storms in Chicago. At one point, we had an enormous flash of lightning and immediate crash of thunder directly over our building (there was a lot of jumping and swearing in our apartment, and a car alarm outside started going off, it was that loud). Our internet went out. It’s not back yet. After two calls to our ISP, it looked like the problem was the router, so I ordered a new one and had it rushed to our house. I discovered when attempting to set it up last night, however, that it’s actually the modem that’s not working: the ISP can see the modem is connected, and they can reset it, but nothing comes through on our end. It is a little embarrassing how frustrating this has been. Being limited to internet just on my phone makes me cranky, apparently.
  5. Due to an unexpected change in her plans, my best friend will now be visiting us this weekend! I am unbelievably excited. We don’t see nearly enough of this human, and in fact yesterday we were bemoaning the fact that it had been too long since the last time we hung out with her. It is rare to find a friend I can have over without feeling pressured to entertain, and I am excited for a weekend of low-pressure hangouts with one of my favorite people in all the world.

Facing Fears

It’s been a long winter. I’ve had an on-again, off-again, annoying-as-fucking-hell cold for most of it. It’s never been more than an extreme annoyance, but it’s been there almost constantly for the past several months. Late last week I scheduled an appointment with my doctor for mid-April (the earliest she could see me), and crossed my fingers hoping that I could hold on that long.

And then, this past weekend, it happened: I went from mild discomfort to abject misery in a matter of hours. Saturday and Sunday I mostly stayed at home, fighting off fevers and hoping that if I could just lay low I’d be fine to go to work Monday.

No such luck. I woke up around 5am Monday morning knowing two things with absolute certainty: one, that I had less than a snowball’s chance in hell of making it through a day of work, and two, that if I wanted to make it to any other days of work this week, I needed pharmaceutical assistance ASAP. I was a kid with allergies: I know what a sinus infection feels like, and I know they don’t go away on their own.

Only…I don’t like doctors’ offices at the best of times. Part of that comes from the fact that I worked in a hospital for nearly five years and became very disillusioned with medical institutions in general. Part of it comes from the fact that I am trans and my legal name doesn’t match my presentation. When I’m sick, I like the thought of going to the doctor even less: I don’t have the energy to advocate for myself. It’s scary.

But there was no getting around it. I was getting worse, not better, and I knew I didn’t have enough sick time or PTO to cover more than the one day off from work. So I poked around on the internet and found a Minute Clinic near home, emailed my bosses to tell them I’d be out for the day, and tried to get a bit more sleep before facing my fears.

I dragged myself out the door and onto the train before I really had time to process what I was doing. By the time I got to the sign-in kiosk at the clinic, I was feeling pretty delirious. I grimaced as I typed in my legal name and gender, wishing I was at my usual clinic where I don’t need to deal with those questions anymore. I tried to smile when the nurse practitioner came out and called my back, thankful there was no one else around to hear her call my name.

She asked about prescriptions. I listed my psych meds, and left off the hormones. And then she asked about when I had my last menstrual period, and I realized I couldn’t dodge that bullet, so I backpedaled and disclosed the fact that I am transitioning and on testosterone. To my surprise, the nurse said she wondered, but didn’t want to say anything because she didn’t want to offend me either way.

The exam itself was painless enough, and quick; she concluded that yes, I did have a sinus infection, and wrote me a prescription for antibiotics. And then she asked if I had a different name that I went by, added a note to my file saying I used the name Alyx, and then told me that if I ever come back, I can check in under whatever name I want and just tell whoever’s working that I’m in the system under a different name. While I don’t know if her coworkers are as understanding, I was impressed and grateful.

(A side note: the pharmacist was not so understanding, and more or less shouted my legal first name when my prescription was ready, which was totally unnecessary as I was sitting RIGHT THERE. But oh well. Clearly, I can’t win them all.)

It made me think about the fact that so many trans people (including, at times, myself) go without medical care rather than dealing with the pain and shame and frustration that we often find attached to medical settings, and how lucky I was that things went well. Of course, this mostly just made me angry, because I shouldn’t have to think about how lucky I am that I was treated like a human being. That shouldn’t make me lucky. That should be commonplace. I’m all for gratitude, but I shouldn’t be overwhelmed by it simply because a medical professional treated me humanely: this is something I should be able to expect. I don’t know how to make the medical community a safer space for my trans siblings. I am encouraged by the progress I’ve seen, but it’s not enough. The entire healthcare system in the US is broken, and as we work to fix it, this is something we need to be aware of and work toward.

(To end on a happy note: the antibiotics are working, and I feel much more human now. Hopefully I’m done being sick for a very long time.)

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