Posts Tagged ‘disability’

Since it needs to be said, again from the top.

· I make my disabilities fairly obvious, at least as far as they relate to certain things. This includes the effects that medication may have on me. It is not my responsibility to make my disabilities more palatable or your life easier because you can’t be bothered to remember that I am disabled or how it may limit me, especially when I’m as forthcoming about my disabilities as I am. It is not my job to simplify your life “dealing with me”.

· Although I understand that some people may not like children (and that these people are usually the ones, through conscious action, who have none of their own), this does not give you the “ability” to censor my children from my life. If you think that I am going to be “me without children” to make your life easier, you are mistaken. My children, and being a parent, are an important part of my life, even though that role is one of many facets of my life. I am not going to hold them at arm’s length to make someone’s day, or life, easier. There is a difference between acknowledging that someone may not like children or parenting as much as someone with children, who is a parent… and practically wanting said children to be held at arm’s length.

Six months, or even a year, ago, I would have had a difficult time writing a post like this. I wouldn’t have wanted to offend anyone, and I might have (probably would have) toed the line giving people what they wanted to make interactions with them easier out of concern that I might lose their friendship if I did not. But as I’ve gotten older, I’ve begun to advocate for myself more mouthily, which might have been a long time coming given how I… didn’t do it for as long as I did. I’ve also come to the realization that there are certain things that, if persisting, should disqualify me from a friendship with the people who insist on doing them and that I am no worse for the wear in the event that this occurs. Take me as I am or don’t. It’s your choice.

That took nowhere near as long as anticipated.

Bub’s microSD is completely set up with no issue and he has all of the games that he currently owns on it!

Well, the digital ones.

I did get him some digital games when the COVID-19 (coronavirus) pandemic was… being treated as more severe of a thing, a crisis, simply because I didn’t want to have to wait for them to come in the mail when there was bound to be a delay and could just as well switch Amazon orders from physical copies to digital copies. I did that until the mail was not quite as… delayed, at least on the end of games and other things actually being shipped out (“non-essentials”, and as a gamer I believe they are not a life-and-death thing).

In other news, I’ve been reunited with ten doses of Fioricet at two pills and twenty doses of Fioricet at one pill depending on how I take it. I try to take at least one as soon as I am aware that a migraine is actually just starting to become a migraine (“could this be a headache?”, no, never, not in my world), and I’ve gotten better at timing this. Not perfect, but I have gotten better at it. Since I now see the local pain management clinic for my migraine needs with my neurologist “on call” because she doesn’t feel comfortable co-treating unless absolutely necessary, I can work with them to coordinate being on the proper medications at the right doses and exploring things such as Botox. A few years ago, you wouldn’t have caught me dead consenting to be injected around the face and neck, let alone anywhere at all unless absolutely needed, but here we are.

If that ever actually happens I anticipate making sizable dents in my (our) gaming backlog, I really do.

Since I haven’t actually mentioned this here…

At the local pain management clinic, I was put on 2,700mg of Gabapentin to see if it affected my migraines. I titrated up to it over the course of a month. Doctors have people titrate when they’re going up to higher doses to try and minimize the “medicated” effects that the medication is more than happy to provide, but I got there. And as I got there, a numbness began to form in my left hand that I didn’t pay much heed to until I realized that I could only really use my index finger and thumb, that I can not bear weight at all in my left hand, and if I want to type coherently with both hands I need to watch exactly where my left hand is because I hunt and peck by memory. The numbness kind of goes up my arm on that side, and I have milder numbness on the back of my left foot. Since it is helping, the decision was made to leave me on it for as long as is safe and tolerable, and I am adjusting in the meantime. I am also back on Fioricet, and recently had my dose upgraded from one pills to two as needed. If I can get away with it I only take one pill, but I know myself well enough by now. If the side effects from Gabapentin persist or get worse, I will titrate back down.

I was also put back on Olanzapine as needed for migraine abortion, but this medication has made me gain weight. Too much weight gain adversely affects my spirometry, and if it keeps going, my ability to breathe (so then there would be weight gain on top of my already pre-existing asthma). I take it only as I need it…

I am also thinking about having my primary care doctor upgrade my nortryptline from 50mg to 100mg, too.

I should have done this awhile ago…

For the most part, I’ve transferred my neurological care from the neurologist that I was seeing one town over to the local pain management clinic here in my city. My primary care doctor was, and has been, in full support of this and thinks that it was (is? how do I phrase this?) the right thing to do. We discussed Botox when I was seen for the first time, which I am amenable to attempting… we just need to get insurance approval for it, or know that insurance denied the clinic’s attempt to seek approval for it from me so that we can appeal the denial. So far, no one relevant has heard anything back about whether it was denied or approved… so I guess that’s a waiting game, and we’ll see when we see. In the interim, and to have it on hand in the event that I need it, I’ve been prescribed Fioricet again, and we are currently working on getting me the highest dose and frequency of that medication which works, but not go beyond that unless we have to so that I don’t inure to it the same way triptans do in that they no longer work on me at all. “Fioricet is love, Fioricet is life” has become one of my biggest inside jokes, because to be honest, it works decently…

For me, for someone who very often doesn’t get a lot of pain relief other than by waiting it out, this is huge.

I also found out that I am on nearly the largest dose of Gabapentin. That is 3,000mg, and I am currently on 2,700mg. I’m also not sure if I’ve mentioned it here, but I’ve begun to develop peripheral neuropathy on my left side due to it… but as long as it helps migraines, which it does, I am reluctant to give that up unless I am made to give that up. The only major downside to this is that I am left-side dominant. My left ring finger, left pinkie finger, and the area going downward from that to my elbow is numb now. I also can’t bear weight on or with my left hand. But like I’ve said, if it makes a sizable dent in the pain, I am willing to live with all that.

The back of my left foot is also numb, which means that I have to be careful walking, but… see above, heh.

I was so busy that it actually skipped my mind.

Part of me did want to give NaNoWriMo the “old college try”, as they say, but I became so busy during the month of November that it completely skipped my mind. At some point I do want to participate in it, though. Or, at the very least, compose an entire manuscript in a month’s time (or… approximately a month’s time).

I’m not sure if I covered it here or not, but I’ve been reunited with Fioricet to treat the most painful of migraines, and I’m finding that it works better than any triptan ever has… but the bar is low for that, because triptans do not work on me. I get most of the side effects from taking them, but I stopped getting substantial pain relief years ago. I feel like the local pain management clinic is taking me more seriously when I tell them which medications do not work on me at all as compared to which ones actually help, especially now that I’ve had two visits with them. Around here, you visit with them monthly once you’re an established patient.

In other news, I bought Bub Sackboy for the PlayStation 4 since actually being able to purchase a PlayStation 5 seems like it’s closer to an act of God. At one point, I had one in my Walmart cart ready to check out with it, but the site crashed so badly that by the time I could load my cart to check out, all of them had already been sold. This annoyed me quite a bit, and it continues to annoy me that Sony has mismanaged the pre-ordering of this console and the actual ordering of this console as badly as they have. I’d just like to be able to buy this without there being any massive hiccups along the way preventing me from doing so. But Bub is down for the LittleBigPlanet life, so he’s not going to mind what console it’s on as long as he can play it with me and it runs well. (Still, though, I would like to get my hands on a PlayStation 5…)

And I’m making a Christmas list for myself since the kids’ Christmas lists are more or less complete.

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