Posts Tagged ‘disability’

Hurry Up and Wait, the anti-climactic sequel.

Sometimes I get the most… amusing spam comments on here, I’m not even going to lie. Again.

Anyway, I wish that my insurance had approved my pain management clinic’s last request for radiofrequency ablation (also, and affectionately, known as “probes to the back of the head”) by the time the appointment that I had made for it rolled around… because even though they were given four weeks to do so, they managed not to get to it in time, which resulted in us having to cancel that appointment, and then after my pain management clinic contacts my insurance provider about why it had taken them four weeks to fail to make a decision on it, they approved their request the afternoon after I was supposed to be seen to have the procedure done. Sad face. That just means that I’ll have to wait until that rescheduled appointment comes around, which will be next week. I was at the mercy of the receptionist when she called me since so many appointment slots had already been filled for this month before the authorization for that procedure would have expired… which wouldn’t have been a problem if my insurance had approved it like they were supposed to rather than waiting four entire weeks to sit on it doing nothing, which didn’t happen last time.

I want off of this bureaucratic bus, please. I would like off of this bureaucratic bus, please…

Since I haven’t mentioned this in here yet…

As many of us thought (and feared) would happen, Roe v Wade was overruled, and abortion is no longer a constitutional right in the United States. Living in Texas, most of you can guess what our state governor thinks about that… although the current law, and trigger laws, still allow me to get an abortion if I get pregnant again — another pregnancy would risk “the life of the mother”, or my life, since my epilepsy is now that severe and I have periods in which I go apneic during my sleep for as little as a few seconds or as long as thirty to forty-five seconds (waking up from that is not fun because it feels like I’ve just got done running a sprint). If I get pregnant again and attempt to stay pregnant, the chances of me dying in my sleep from a nocturnal seizure are more than 30%… and I mean, they were never low to begin with, but research into nocturnal epilepsy as it relates to pregnancy has indicated that the two do not bode well together and it’s not something that I am ever going to attempt to chance. I think I’m going to discuss sterilization with my OB/GYN at my next Depo-Provera appointment and see what, if anything, I have to do to get the ball rolling on getting my tubes tied — the thing that was holding me back on that was, and is, the fact that I am immunosuppressed from the prednisone usage that I am still trying to stop, and no one wants to risk a keyhole infection that is likely going to be Staph. However, with the political climate, that risk is acceptable.

So many Republicans in this state are already chastising women about how they should “make better decisions” and “have self-control”, and it makes me so badly want to mention something here in this blog that some of you already know about, but I’ll get to that in time. (Let’s just say that I check my tracker.)

If it’s not one thing it’s another, but we make do.

Bub’s Steam Deck came in the mail yesterday!

I’m in the process of setting that up for him. I need to get a microSD card for it so that he has access to all of his games, and I’m in the process of having one shipped to my house now. It’ll get here when it gets here, and then I can finish putting this thing together and give it to him for his birthday. The theme of this year’s birthday is (probably what it has always been, but with a bit more oomph this time) games, because Bub loves games. That’s one of the ways that we’ve bonded over the years, and I see absolutely no harm in it.

I also got my formal assessment results in the mail, and I am autistic! Not that I wasn’t told that I was after I completed testing, and I don’t see it as a disability (I do have mild adaptive deficits, but a lot of those come from anxiety, and I have generalized anxiety disorder largely caused and exacerbated by… well, my mother, who I’ve written about, and who I’ll probably continue to touch on in subsequent posts to flesh this out a bit further). I have the results kept in the bottom dresser of my drawer where I tend to keep important things that I’m not going to need to grab on a regular basis, things that I’m probably not going to need to grab at a moment’s notice for some reason, so it is what it is. I mean, I already knew that I was autistic, so… yeah…

Don’t tell me something I don’t already know.

My pain management clinic wanted to make sure I knew how disabling my migraines actually are — yeah, don’t get me wrong, I’m aware, I just try to ignore as much as I can for as long as I can (and trust me, this has not been a tenable option for a long time) — as far as employment prospects go. I have found a lawyer who is more than willing to take my case on to help me get disability, though. He’s only going to take a certain percentage of my backpay if successful, which I am more than fine with. As soon as his office got the function report back from my pain management clinic, someone immediately contacted me with new client paperwork to fill out, which I filled out and sent back to them, and I gave them a copy of my state ID. Then he contacted me a few hours later to tell me that he would be the one taking my case, asked me if I had requested the hearing yet (I had), and made sure that I got the papers back to his office that allowed them to request more recent copies of my medical records. Done and done. You don’t have to tell me twice here…

I’d still like to make something out of streaming, but I acknowledge that there are and will be limitations there as well, especially with where my migraine frequency and severity are at. Plus, in the long run, if I do make something out of streaming, there is a waiver in place that will allow me to keep Medicaid eligibility as a disabled person up to a certain point because I can prove that I need it to continue to be able to stream.

Am I going to do this again? I don’t know.

So, not too long ago I had the first of what is supposed to be two nerve ablations to the back of my head to see if this stymies migraine pain. They numbed the back of the left side of my head after liberally applying chlorhexidine to it, which I liked a lot because numbing it with lidocaine (did they also use dexamethasone? I don’t know) has immediate effects on any pain that I may be having. Once that fully took, they inserted probes into the back of my head that I did not even feel that sent pulses to the left side of my occipital nerves over the course of four minutes. Once I was done I was done. The probes were removed, I was bandaged up, and I was good to go. Getting home was… fun, though, especially once the local anesthetic wore off and everything hurt. I was told that the nerve “healing” would hurt a bit, but then it would stop hurting because it would not be able to communicate feelings of pain (or as effectively, anyway), but we’re still in the part of that where it hurts, I feel a whole lot of pressure, my body is trying to make sense of what happened, and I don’t like the feelings that this is producing in the back of my head. Fioricet has not even helped me here.

I have literally had to take 40mg to 60mg of prednisone to make the back of my head feel tolerable.

I’m not sure if I’m going to have the right side of my head done if this is how the left side continues to feel.

I mean, I should really have expected this too.

Bub and I are sick with… something. It is not COVID. We’ve tested for COVID with some of the tests that we have here at the house and both of them are negative. If we continue to have concerning symptoms I will have both of us antibody (or is it antigen?) tested. This will be particularly concerning for me if I have it.

I am also continuing to get severe migraines on Lexapro that are only touched by prednisone, and this is not sustainable for long periods of time. I’m starting to wonder if this medication is… just not right for me, because we might have to throw pain medication at it just for me to be able to tolerate it, and then that’s going to start a chain of events that might interact with other medications that I am on that I need to be on.

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