Posts Tagged ‘disability’

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.

I’d just like to make antibodies to this, please.

My body wants to do prednisone. It is clearly whining for prednisone.

But I want to make antibodies against COVID-19, so I am going to delay prednisone for at least twelve more days. Given the kill count that COVID-19 has, it is in my best interest to make antibodies. If that means ball and chain to my nebulizer, taking Benadryl every four hours, I will do what I have to do. Due to my health problems, I am at particularly high risk of complications from COVID if I do manage to catch it. I would have gotten vaccinated sooner than I did, but I needed to be off of prednisone long enough to make this possible… I needed to be able to make antibodies to the shot. And of course my lungs are going to come in at the bottom of the ninth and try to fuck this up, but I’m not about to let them. Like I said, if I have to ball and chain myself to my nebulizer and take Benadryl every four hours, that will just be something that I have to do long enough to be able to make these antibodies. I’d rather not be totally defenseless against the real thing here.

I suppose I’ll see how this goes in the coming… oh, I know exactly when, twelve days. This will be fun.

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