Posts Tagged ‘disability’

18
Oct
2020

Do I do the thing now, or should I wait some?

categories: personal; word count: 293 words

One of the things that I bought myself with my economic stimulus payment was a manual treadmill that fit within my budget. Along with that, I also got a FitBit Versa Lite from someone who happened to be selling their used tracker on eBay for what was an extremely good price, and I didn’t need all of the bells and whistles that would have come with a Versa 2, so I sprung for that. Although it took me a bit of time to get used to the idea of sleeping with something on my wrist, the transition was surprisingly easy… but I’m attributing this to the fact that wearing the Versa Lite feels more like I’m wearing a slightly snug watch than anything else, and prior models of the FitBit didn’t quite feel like that when they were wrapped around my wrist. Coupled with the fact that this also tells me the time and lets me check the weather (which is good for planning when to do things, making sure that it’s not going to rain on those days), I do have to say that I’m actually a fan of the Versa series. On top of that, this one tracks my oxygen saturations at night… and being an asthmatic, why not be aware of those? Especially because I do tend to have nocturnal symptoms of it…

I’m still deliberating when the best time is to start those virtual races that I mentioned here in this, though. Do I want to acclimate to walking on this treadmill to the point that briskly walking a mile is as easy as it’s ever going to get for me, and then start? Or do I want to start now? I’m not sure. I’ll continue to mull it over.

18
Sep
2020

Since I have not formally amended the list…

categories: personal; word count: 154 words

Neurological medications:
Lisinopril, 5mg once daily
Olanzapine, 10mg once daily if needed
Promethazine, 25mg once daily if needed
Rosuvastatin, 10mg once daily
Trokendi, 200mg once nightly
Zomig dissolvable melt, 5mg up to three times per week

Respiratory medications:
Albuterol, one vial nebulized up to every four hours as needed
Albuterol, two puffs inhaled up to every four hours as needed
Claritin, standard dose
Singulair, standard dose
Symbicort, two inhalations twice daily

Other medications:
Depo-Provera, taken every ninety days

I went ahead and removed prednisone from this, although I take it if absolutely needed. I’m not “on it” due to the pandemic, because if I am exposed to COVID-19 we want me to be able to fight this off to the best of my ability and it is a potent immunosuppressant (that does have purpose). I also alphabetized the list since Symbicort was above Singulair for some peculiar reason, and albuterol wasn’t alphabetized properly… heh.

13
Sep
2020

Expecting people to “act less disabled” in spaces.

categories: personal; word count: 487 words

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.

10
Sep
2020

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

categories: blog maintenance, personal; word count: 322 words

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.

05
Sep
2020

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

categories: personal; word count: 357 words

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.

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