Posts Tagged ‘advocacy’

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.

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.

Soon, I have another disability hearing. Go me.

In my spare time, I’ve been stylizing our YouTube channel in the hope that at some point I can get it off of the ground. I’ve been uploading most of the videos that I posted on Facebook to it in the event that, for whatever reason (and trust me, there are several) I do decide to leave Facebook, that way the videos that I’ve taken of my kids are stored elsewhere… and I’m also backing up all of the pictures that aren’t on Instagram and posting them on MeWe for that same reason, now that I know that enough of my friends use it that it’s not a waste of time to have an account. One thing that the site has going for it is that it looks nice and is easy to navigate. Now more people need to move off of Facebook and onto it, or off of Facebook and onto just about any site that isn’t owned by Facebook. The entire point of the process here is to get away from Facebook…

In the interim, I’m continuing to fight for disability benefits with chronic, intractable migraine disorder as my primary diagnosis and my asthma as… something that exists and is there. I have literally heard “you’re smart, you can adapt (to other work)” so many times that if that alone could induce vomiting, it would. My gaming backlog has only increased by leaps and bounds because I have to be careful about using electronics, those being a huge trigger for… wait for it, migraines. There are things that I want to do that I can’t do when I want to, or even at all, because of my migraines, so this “adaptability” is bullshit on the part of the people that want to insist that I am capable of adapting, let alone to work. I expect that I will have to continue to fight for disability benefits and I will be pleasantly surprised if I do not at just about any point.

But honestly, I can see why some people give up. They’re forced to do so through a dehumanizing process.

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