Posts Tagged ‘disability’

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!

Since this now bears a slight update, heh.

Neurological medications:
Lisinopril, 5mg once daily
Naratriptan, 2.5mg up to three times per week
Nortriptyline, 20mg once daily
Olanzapine, 10mg once daily if needed
Promethazine, 25mg once daily if needed
Trokendi, 200mg once nightly
Zomig dissolvable melt, 5mg up to three times per week

Respiratory medications:
Albuterol, two puffs inhaled up to every six hours as needed
Albuterol, one vial nebulized up to every six hours as needed
(for some reason, this was changed when I began filling recent scripts)
Claritin, standard dose
Symbicort, two inhalations twice daily
Singulair, standard dose

I continue to be off of prednisone right now, which I chalk up to being in the middle of a pandemic.

Other medications:
Depo-Provera, taken every ninety days

I still don’t exactly like this doctor, to be honest.

I’m beginning to wonder if my (now third, and me changing them like I have has not been because I have wanted to) neurologist doesn’t remember anything at all about her patients and has to ask them the same questions because she doesn’t remember anything about them for… whatever reason, or it’s part of her doing intake to ask them the same question about the frequency and severity of their symptoms for whatever reason. At any rate, being reassured that I do not seem to be exhibiting medication overuse headache from any combination of medications that I have been on must have been reassuring to her, or it might have been the equivalent of “egg on your face”, at least if she’s the kind of person to accept humility. I’m not sure yet. She seems to think that olanzapine has been contributing to my weight gain more than lisinopril has, but given the history of me exhibiting the peculiar side effects to medications whenever I do exhibit side effects to them (is this a ginger thing? is this a me thing? could be both, could be synonymous), now she’s open to taking me off of the lisinopril at some point… but wants to give me the choice of continuing with the olanzapine because it has been effective single-dosing at ameliorating migraine pain.

And along that vein, I asked her if I could begin to take an anti-depressant (antidepressant? how do you write that out?) as a maintenance medication since certain ones show efficacy in diminishing migraine frequency and severity, so that’s what I’ve been doing. I have no shame about it, and I don’t feel any of the stigma. I am also weaning off of Trokendi because we have begun to speculate that with my migraine frequency and severity, it is no longer effective, so one of two things will happen: I will wean off of it and maintain the same frequency and severity, or I will find the lowest dose at which it continues to be effective.

Given that it has a side effect profile a mile and a half long, I do not mind this at all. I really do not mind.

So basically, I’ve been weaning and coasting to determine if there still is an effective dose for me for this.

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