Posts Tagged ‘disability’

Since I don’t want to forget to write here…

I was able to get in with the psychiatrist that my primary care doctor wanted to refer me to on Friday, and I was switched from nortryptline to Lexapro. For some reason, even taking it precisely as I had been told to, I got a fever the first two days. I know that I’m not taking it with anything else that contains serotonin modulators, or even medications that same day that do that. So I guess this is just something that I’m going to have to ride out for a week, and if it doesn’t improve talk to my psychiatrist or his nurse over the phone about whether or not I need to be changed to another medication. I do hope that this one works though!

Meanwhile, I got the kids a desktop that they should be able to use to do everything that they could ever want to do! It’s going to be worth the piece of mind of never having to crack into this thing… well, not unless I’m maxing the RAM out on it supposing that it isn’t already maxed, I’ll need to check on that. I think that’s all I’m going to have to do with this thing. It will game, it will stream, it will run everything that we could ever want or need a desktop for. It’s a shame that the All-in-One couldn’t, but it is what it is. Thanks, Manchin.

In my spare time, I’ve been setting up Twitch.

I would just love to be able to stream games and do that as a thing.

It would work around my disabilities and our schedules in that I would be able to set my own hours. If migraines prevented me from streaming one day, I could do it on a day where they were more tolerable (or, better yet, mostly ameliorated by medication… I mean, you can dream, can’t you?), or if Bub and Monster needed more of my attention on any given day due to appointments that we would have to make our way to and back from, or even just because, the same principle would apply. Right now, I’m waiting for my arm to heal up more from the Staph infection that became cellulitis due to Bub’s pinching that broke skin, but only because it is my dominant arm and I don’t want to have to make clothing choices based on how the bandage would best be covered up to avoid people attempting to discuss it in stream chat. So we’ll see.

In the interim though, I have been setting Twitch up on our desktop and laptop! I’m thinking that I’m going to give Twitch Studio a go first because it does nearly everything that I would want something like this to do, and the one thing that I’ve been having issues with — setting Alerts in specific places — may be able to be remedied since an admin on a Discord server that I am a member of told me that they can reach out to Twitch themselves to see if it’s possible to fix this within the Twitch Studio program. I continue to hold out hope that it is and will be, but I also have a really sweet gameplay overlay that I got for this particular purpose that having the Alerts properly set in all of their places would make the most major difference with.

Me: 0, Bactrim: not 0, is anyone really surprised?

Well, I am no longer allowed to take Bactrim for… well, any reason.

Prior to this, it was listed as a moderate allergy in my medical records because all it had caused was a headache and severe dryness of my nose and throat after my dose had to be raised adjusting for my weight as a child. Because this was so early in the process of taking it for an ear infection, I was taken off of it, put on something that I wasn’t allergic to and the allergy to it was noted in my files. However, since the Staph infection that I happened to… get on my skin was MRSA and I have a history of being immunocompromised, I told the local hospital that I would be willing to try Bactrim since it was the best suited for the problem that I had. I took every single dose of it with Benadryl as directed, but the headaches became severe migraines (which I had to medicate), and by the end of it, I had an antibiotic rash all over my face, chest, and upper stomach. For most antibiotics, late-onset rashes aren’t that big of a deal and you can finish the thing anyway without having to worry about an allergy. But in a history of someone already allergic to it — and it being a sulfa-based drug, meaning that antibiotic rashes at any stage in treatment are bad — this was… not good. At any rate, it then snowballed from there, and I got chills and a fever from the antibiotic. Putting myself back on prednisone out of sheer necessity at this point lowered the fever and reduced the rash, and forty-eight hours after that point I began to feel better. However, getting over something like this can take up to a full week for you to do, and now that I know that I am severely allergic to Bactrim this is what I expect.

Now I just have to see if this infection is actually gone, and these wounds actually heal, for our next trick.

Prednisone hates me and still clearly hates me.

I’ve seen the doctor once for this and I was prescribed antibiotic gel to put on the wound at dressing changes, but… that isn’t actually going well, so I will probably have to see the doctor again for the wounds that Bub gave me on my right arm pinching me while having meltdowns, because apparently he broke skin and now it is infected. I also have a few other surface-level Staph infections on random places on my skin that continue to be and stay bandaged and are hidden by clothes, but I’ve been off of prednisone long enough to be able to get my booster COVID-19 shot (finally!). I think at the end of the day, prednisone has broken me as I’ve referenced several times already in here. I wouldn’t have taken it again if my primary care doctor and pulmonologist didn’t tell me to continue the burst and taper that I had been prescribed due to a worsening of asthma symptoms. And on top of that, I feel like I should have held out for the J&J booster rather than get the Pfizer booster recommended by the pharmacy because I actually feel sick, not just “feel sick” like you do when you get immunized and your body is beginning to make antibodies to fight actual contact of the virus with should the need ever arise (as it likely will during, well, a pandemic of all things).

Either that or I should have waited longer than I did to get re-vaccinated even if I waited “long enough”…

At this point, I should really have expected this.

Tomorrow the massive screw-up that was “let’s see if you suffer from medication overuse headache and, in doing so, limit the one medication of yours that actually works because we didn’t bother to read your medical chart where MOH has repeatedly been ruled out” should get fixed, but given that this is the War on Pain Patients I don’t actually have that much hope for it. Some doctors read my chart better than others, and the ones who I can tell didn’t read my chart suggest that I should take aspirin or Ibuprofen as needed for pain even though both of those things worsen my asthma — it used to be that I could more safely take them while on prednisone, although there were instances where I tried taking them with Benadryl and nebulized albuterol, but that didn’t sufficiently make them safe to take and it eventually got to the point where I couldn’t take them with anything unless I wanted to have worsened asthma as a result (which, obviously, I do not). In the absence of being able to take either one of those — NSAID-reactive asthma is a thing — I can only safely take what I am prescribed to take. I wish they’d prescribe me something long-acting that works.

I just want to be able to engage in hobbies and interests knowing that pain medication will somewhat help.

This is not where we need to be at, fam.

Captain’s log, day 6,666: the right side of my jaw began to swell and hurt. Took prednisone. Hate prednisone. But I’m feeling better. Am still not sure why that happened in the first place but hey…

This month’s appointment with the pain management clinic that I attend did not go well. For some reason I was prescribed less of the pain management medication that works (Fioricet), and I was prescribed… a copious amount of muscle relaxers. I was prescribed these years ago in conjunction with Fioricet and I felt like they helped, but that is not the case this time, so I’ve been (self-ownership of word here) feeling stupid and tired as I stumble into things. I honestly think I’m going to stop taking them, as I’ve been told to take them twice daily as needed, because they are clearly not helping me out at all and I am still in pain. I don’t want to seem like a drug seeker or anything, but we are not yet at a place where I feel like I can indulge in hobbies and interests with the time I have to participate in them without having to work around that by scheduling doses of medication and wearing 80% amber-tinted sunglasses. So how do I speak up here?

At any rate, sunglasses and all, the boys’ all-in-one computer is almost fully loaded! I will then defragment the HDD drives, which are thw two external drives currently storing the majority of Bub’s games, and at that point I think I will have at it. I might bring up Among Us, music and all, to see if Bub runs in here squealing.

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