Posts Tagged ‘disability’

Expecting people to “act less disabled” in spaces.

This is the closest that I have come thus far in this entire blog, aside from writing about… various experiences that I have had with attempted religious indoctrination as they relate to Bub’s father’s family, in writing about specific experiences with people, but I felt like they had to be addressed in the way of disability advocacy: the expectation that non-disabled, or sometimes even other disabled, people have in expecting disabled individuals to “tone down the disabled parts of themselves” in general, to “act less disabled” in mixed spaces, and not to talk about the parts of their lives that have to do with their disabilities, even if being disabled “takes up a large part of their lives” and they are proud of being disabled. Like I’ve said, this seems to be something that society does in general, whether it is being done by non-disabled members of society or even disabled members of society who do not feel that they are “as disabled”, who have better passing privilege (the ability to be seen as non-disabled by society if and when they want to be, or simply to “turn off” being seen as disabled to their advantage), or who are not as proud of being disabled as the disabled person in question. I’ve noticed that this intersection can also sometimes occur when the disabled person in question is a member of the disability advocacy community, or “disabled community”, in general.

I do not like having to “tone down the disabled parts of myself”, as I feel that being disabled is an important and integral part of myself. I can not be myself without being disabled, and I should not have to expect to “be the non-disabled part of myself”, because that is a large part of my identity. If I were not disabled, I would not be the person that I am. If me being who I am makes you uncomfortable, that is something that you need to reconcile with yourself. That should not be something that I need to “tone down” in myself to make you more comfortable with me. I should not be expected to “act less disabled” in mixed spaces because there are non-disabled individuals present, because what sort of standard does that set in the era that claims to be all about social justice? Not a very good one, I’m afraid. Disability is not, and should not be, something that you can “turn on and off” to make other people’s lives easier. If that is something that I feel I have to do to make a group of people’s lives easier, maybe I need to consider how much time I spend around that group of people. Me being disabled is simply me being myself. If someone can’t tolerate that or doesn’t like that, then they need to tell me that they can’t tolerate me and that they don’t like me. It’s just that simple.

I’ve started this habit, and I do not regret this.

In between migraines and… living the slightly busy life that I do with my kids, I’ve started to queue up posts, and with very few exceptions, I do not regret getting into this habit. This means that if I am having a day where there is a lot of migraine activity (and to get the diagnosis of chronic migraine disorder, you have to have at least fifteen headache days per month with at least eight of those being migraine days, and I have that diagnosis… on top of that, mine are intractable, which means that medication does not easily “put them down”), or Bub and Monster are keeping me busy, I don’t have to worry about missing days posting on here. Having posts queued also helps in the event that my server actually does suffer the downtime that I mentioned last month, because when it does manage to come back up, the posts that I had queued will automatically publish… or, at least, that’s how they have so far, but the first, last, and only downtime that I actually saw my site have lasted over the course of one night, and then I had to fix the SSL that I have here.

I am continuing to titrate down on Trokendi, having been on topiramate in some form for awhile now.

Like I’ve probably already mentioned(, using social media so much that I have to ask myself “have I mentioned this here?”), if I am having migraines at the frequency and severity that I am, the medication that I’ve been on the longest… might not be the one that’s working. I did feel it when I dropped down from 300mg to 200mg, but once I got over that hurdle, I felt no difference. And it wasn’t even so much as more migraine activity than I felt the side effects — or lack of some, if you want to be technical — of dropping down 100mg.

Don’t underestimate prednisone’s efficacy. At all.

Because I’ve needed prednisone as much as I have, it’s managed to do a number on several of the organs in my body (liver function, weight gain), and has affected my body in a myriad of ways (A1C of 5.8 on some examinations, elevated cholesterol). The newest side effect that seems to have been exacerbated by my need for prednisone seems to have been the gum infection that I mentioned in a previous entry — it’s beginning to look less like a gum infection and more like the beginning stages of periodontal disease, although it happens to be over a bridge in my mouth that I had placed when Bub was extremely young (so it couldn’t have started in a better place, and I mean that, because it is not “over” an active tooth). But the bad thing is that it looks like it is the beginning stages of periodontal disease, because the doses of and frequency at which I have needed prednisone to suppress problematic symptoms of asthma have lowered my immune system that much, and that was one of the trade-offs that had to be made to better my health.

I wish that this was not one of the trade-offs that we had to make, but it appears that we had to make it.

Fortunately for me, the bridge is still cemented into my mouth and does not appear to be showing any signs of “giving”, which is good. Things would be a whole lot worse if the bridge were compromised because of where it had to be placed in my mouth, and it’s not. And the fact that nothing has begun to spread beyond this point is also extremely good, because that is one less thing that I have to worry about. I continue to brush my teeth two to three times a day and use mouthwash, especially “the purple mouthwash”, which is suggested in this situation, and I do try to stay off of prednisone when I can avoid it… but I also acknowledge that in cases like mine, prednisone is a necessary evil, and there’s absolutely nothing that I can do about it.

That wasn’t as awkward as I thought it would be.

Since the medication that my pulmonologist prescribed for me during this pandemic (Symbicort, which comes in an actuated inhaler) gave me an actual gum infection, I had to make an appointment with my primary care doctor to… you know, sort that mess out. Without going into detail, the symptoms exacerbated themselves in a matter of days, and I knew that I needed to be seen by someone to get on medication for it. However, my primary care doctor is doing Telehealth consults for all consults that he can do this with, and mine fit the bill for that. It may have taken him an hour and a half longer than my appointment time to get to me because of the people that were “ahead of me in line”, or however you might want to word that, but because I have a smartphone I was able to be seen by him without actually having to come into his office. He prescribed me some medication to swish around in my mouth to get rid of the infection, which I am hoping actually gets rid of the infection, and went over my most recent bloodwork. Since corticosteroids have begun to do a number on my body, I’ve been prescribed some medication to ameliorate the effects that they have been having on me so that they continue to remain open to me to take as needed, which I do like.

Meanwhile, I’ve been working on a manuscript in the event that I ever do decide to self-publish — and if so, when, which is the second big thing that I would have to consider — to see how many words I am able to “crank out” when. It might be a bit hard to participate in NaNoWriMo given that so many people shoot for approximately 1,600 words per day to get to 50,000 by the month’s end, especially since I want to write on non-fiction topics, but I’ll continue to think about throwing my hat in the ring for participation this year to see if I can actually swing it and write about what I want to write about during that time span! I don’t want to “sell myself out” and not write about what I want to write about, but if it’s something that would involve biting off more than I can chew, it might be best for me to plan accordingly, not participate this year, and/or figure out what I want to write in coming years that would allow me to hit the “daily average” and still have a reasonable shot at making it to 50,000 words by month’s end. But seriously, I’m glad that I know this now!

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