This person came after my children when he found out that they are disabled and receive various government benefits as a result of that. I decided that since he had the nerve to come after my children, I would censor my own name out but not his — make him own what he said. And with the help of a good friend, this was actually reported to this person’s job, because my friend was able to find his LinkedIn profile and we were able to confirm that it was his. So they Tweeted the full screenshot of him saying what he said to me to their Human Relations department, who promised that they would look into the post and take appropriate action. It was this post that drew him a few supporters convinced that “if you can type, you can work”. I would have let this one go if he didn’t decide to come after my disabled children, but you reap what you sew when you bring someone’s children into it for no reason. I have decided two months in advance that next year, I’m not going to let so many of these comments go, and if they are bad enough I am going to try to report them to their jobs’ Human Relations departments. I have friends who are more savvy about this who are willing to help me, too. If they read this post and would like to, they can out themselves in the comments.
Posts Tagged ‘disability’
This went about as well as could be expected.
Some people found the Tweet that my friend sent to the Human Relations (HR) department of the job that the man has who snidely told me that he expected me to raise my profoundly disabled children to be dependent on other people rather than… what was it, learn to rely on themselves or support themselves or something? The conversation eventually degenerated into some of them thinking that I am not actually disabled, that I am “gaming the system” — I wish I weren’t disabled, but anyway — because I have hobbies and interests that I at least try to engage in. And as it is, Bub is getting his video games. I don’t care how much hot coal I have to walk across to give them to him, or how much pain medication I have to responsibly take. I wear sunglasses inside the house almost all the time now unless I have to take them off because I can’t see what I’m doing while I’m wearing them. My half of the house is dimmed. Sometimes I like to at least attempt to enjoy hobbies and interests even if they cause me pain and even if I have to medicate that pain.
I am sick and tired of conservatives suggesting to disabled people “jobs that they can do at home” because, yeah, let me work from home, be on the clock, and have a seizure. I go apraxic during those. Or let me be incapacitated by a migraine that is actually substantially worse than labor pains… and trust me, I do know.
“But he shouldn’t be punished for saying one thing (he should regret)”… but he brought children into it.
Like, I wouldn’t have cared if he had focused his ire on me, but he brought my children into it.
Opening the Floor: Acquiring a Formal Diagnosis
I’ve actually been asked this more than once, a small handful of times, and I don’t mind being asked about it or… well, most questions at all that I’m willing to answer in my blog. I’m as open as book as Rinoa Heartilly from Final Fantasy VIII for those of you who have played the game. Maybe that’s why I like her character…
But the question, so as no to sidetrack: would I ever pursue a formal autistic diagnosis?
I’ve given it a lot of thought, especially as I’ve become more comfortable identifying as an autistic person. If a doctor in my care team said something about it, I would not deny it (I would probably go the route of “I think I may be autistic as well”, especially as it relates to my children). If it helped me get disability benefits I would have the process worked up. My thoughts regarding this have by and far been passive though — if someone wants to work me up I am more than amenable to that. If someone in my care team calls me autistic or possibly autistic, that being their call, I would not deny it. However, I feel that I do not need the same supports that my children need, so it is not something that I would actively seek out at this time to the tune of calling my primary doctor, telling the receptionist taking the call that I thought I was autistic and would like to work the diagnosis up, that sort of thing. In other words, I am not extremely active or pro-active about it, although if having it thrust in front of me I would be agreeable to having it worked up. I hope I make sense!
Consulting with my care team about my health.
This has been a conversation long in the making, and I’ve thought about it for a long time now.
For those of you who don’t know, I have nocturnal, non-convulsive epilepsy. I have been able to keep my driver’s license as long as I didn’t drive at night, because for the longest time with the exception of one seizure (considered a “one-off” by my care team), I only had seizures at night, so it was safe for me to drive during the day… even though I couldn’t bring myself to get behind the wheel of a car after the first seizure that I had in April of 2019. It was literally as I was preparing to get back into bed after using the restroom at around two in the morning. For a few years, almost until present day, this was something that I was comfortable with — well, not the actual driving part — because the timing of my seizures was fairly predictable, always at night. Sometimes I slept through them. Other times, I’d wake up during one. I could convey to someone else that I was having a seizure even though speaking was difficult, and I rode through feeling like my brain was being shocked and an egg that was being smashed against hot concrete as hard as it could be thrown by thinking of my children. They were my bright spots in the midst of all of this, and thoughts of them helped keep me grounded until the seizure finally ended minutes later (“forever”, heh).
Recently, I began to have seizures earlier in the day. I also became completely apraxic during them, unable to speak at all, and some seizures caused me to drop to the floor in the midst of them (they’re still non-convulsive, I would just literally drop to the floor if I was in a standing position). I still retain the ability to type and write, even though that is incredibly difficult. Auras have gotten much shorter, which means that if I were to drive I would not have enough time to pull off of the road and ride through one as it began. A lot of them cause me to “blank out” in the middle of them, and if you’re speaking to me I will not get the full gist of what you are saying because words will blank out… either one or several. I kept, and am keeping, my care team abreast of all of these developments. I was, and am, at the border of having to relinquish my driver’s license, which I’ve had since I was a teenager. But I decided to make that decision for myself because getting behind the wheel of a car causes me significant anxiety (I start recalling previous seizures and worrying that if I do drive, even if it is this one time, I will have a seizure behind the wheel… as I put it to a well-meaning relative, “I don’t want to put this into a light pole”). I made the decision to relinquish my driver’s license because I have a physical condition that makes operating a motor vehicle unsafe, and I do not see this ever being something that will simply… go away and stop. In the interim, I have been using Lyft — I am amenable to using Uber if it is better though, but my experiences with Lyft have been good — to transport myself places. I did this when it was still a thought to relinquish my driver’s license, something not committed to.
To me, this feels like the “end of an era”, and in that regard it does feel a bit sad. I did have a few well-meaning relatives who wanted me to hang onto my license for six months to a year “to see if things got better”, but as I continued to write about my seizures online, they realized that things would not get better. (And for the record, I was not epileptic at all when I got my driver’s license.) It’s a bit sad to realize that driving is something that I will never do again, but I also feel content with the decision to voluntarily relinquish my driver’s license because I realize that it is no longer safe for me to drive, the idea of it causes me significant anxiety, I have other ways to get where I need to go, and I am doing what is best for me and those who I love. I am at peace with this aspect of my health, as I continue to take medication for it (originally the maximal dose of Trokendi, now nearly the maximal dose of Gabapentin). I intend on switching my neurologist to one in this city for an easier commute to get on some quick-acting medication that will help stop a seizure in its tracks… and no, not even then will I feel comfortable or safe behind the wheel.
It is truly the end of an era, and I am going to continue to do what is best for me and those who I love.
I do not intend to drive again, even if in two years’ time I could theoretically retest depending on my health.
Nerve blocks and me: a thing that is not working.
I got my first nerve block on the left side of my head at the occipital nerve for migraines.
One day I will be able to spell that. Getting back to what I wanted to write about, though…
It seems that these hit and they miss. For some people they work amazingly well and they only need them every four to six months or so. Other people need them like… every two weeks if their insurance approves it, but they help. And for other people, they do not work for a myriad of reasons. Sometimes the nerve gets nicked and that causes problems. Other times, the nerve block intermittently does not work. And then sometimes the nerve block just plain does not work at all. On the worst side of my head, I feel like I am between it intermittently not working and it completely not working. I put myself back on prednisone since that has a history of helping with migraines, particularly migraine clusters, even though that was the last thing I wanted to do… and it made things bearable. I seem to be someone for whom these do not work, although I am going to give them the requisite week to see if things turn around and my migraines become more bearable. If that does not work on either side, I will discuss giving them more often with my pain management clinic to see if that makes them “stick”, and if that does not work, I will ask about excising the nerves. X-rays that I have had done have confirmed that they are the problem, especially the right one.
There are still some things that can be done to help ease my migraines. I am willing to explore all of them.