Posts Tagged ‘disability’

I mean, I’ve put the effort out here, folks.

Soon I may be able to get the flu shot, which is useful even coming up to early February.

Key word, though: soon. And possibly, since taking prednisone for asthma contraindicates me while I am actively on it and for four full weeks after the date of last dose. Over the course of this pandemic I have honestly tried as hard as I could to stay off of prednisone, and I have had varying degrees of success depending on where in the year we have been at. I have certainly put substantially more effort into this.

If I can stay off of prednisone for more than four weeks, I may also be able to get the COVID-19 shot expedited due to the severity of my asthma since I’ve been told that I fall under one of the classes required to get it sooner than the general adult population… 1B, or something to that effect. I’m willing to get all recommended vaccines as long as I can tolerate them in that I am not, for whatever reason, contraindicated from them. Almost everyone else that I know is current on all of their vaccinations, at least the recommended ones, so I feel somewhat confident being protected by herd immunity… even though I’m aware that as various people enter my “bubble” when I do have to leave the house that they, for whatever reason, may not be up to date on their vaccines. I consider it a blessing that all I have to get is the annual flu shot and, whenever I am able to, the COVID-19 vaccination. Looking at you really hard right now here, prednisone.

These things should surprise, well, no one.

I managed to get the key that I mentioned in an earlier post working with some tape.

It’s not the best possible fix in the world, but under circumstances it will do until it can be repaired.

Right now, I know that the two most likely “contenders” for repairing it are to buy an individual key or to buy a new keyboard and have someone who knows a lot more about that sort of thing be the one to install the new keyboard onto… well, this computer. And in other news, my neurologist’s response to finding out that I consulted with the local pain management center here and was taken on as a patient was to passively-aggressively chart in my patient file. There was a reason why I chose to transfer that care, she is that reason, and my care will be completely transferred. I’ve actually stopped taking the medications that she prescribed, weaning off of them where appropriate, and in a twist that should surprise absolutely no one who might be reading this… nothing that she had prescribed me curtailed my migraines even modestly. There was still the whole quality of life issue to be had if I had remained under her care, taking medications that did not bring me more than slight relief, not being listened to when I vocalized these sentiments. At least the local pain management clinic listens to me and prescribed me Fioricet because that medication works…

As mentioned in previous posts here, I shouldn’t have to keep asking to be allowed to be in less pain. I shouldn’t be having to settle for pain to begin with or “learning to live with it”. No. I’m in my mid-thirties here.

None of this should surprise me, but…

I am continuing to wash my hair with water as necessary, having decided to eschew traditional shampoos and conditioners so that my hair can remain as bright as it initially was when I first dyed it… and because shampoos strip one’s hair of the natural protection that oils and sebum gives it, just to turn around and attempt to put some kind of protection right back on it with conditioner. I have found that frequently brushing one’s hair really helps make sure that the scalp’s oils are spread down the entire length of it, and I’ve also discovered that my hair is wavier than even I had first estimated, presumably because it is also soft and regular shampooing was damaging the natural waves because it was making it to where my hair had more of a difficult time holding a wave. Now granted, my hair has never been able to pass for straight, but this actually surprised me more than I thought it would. And at the same time… it didn’t surprise me at all.

I am now doing pulmonary function tests every six months since I am “stable”. As in, the severity of my asthma isn’t expected to change such that more frequent visits are warranted. These visits include the six-minute walk each time that I do them, although it’s a bit cramped on the third floor of the building that my pulmonologist now works in. But we make do, and my doctor gets the numbers that he wants from me…

I may also ask my primary care doctor (physician) to raise my dose of nortryptline from 50mg to 100mg, too.

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.

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