Posts Tagged ‘disability’

This is one of the things that I hate about Texas.

Don’t get me wrong. I hate almost everything about this state. But I hate this the most.

I hate the fact that I’ve had to make progressively more difficult decisions over the years to ensure that my disabled family gets and retains access to benefits and services that we need. I hate the fact that we’ve had to fight for approval on some of those as hard as we’ve had to, even though the majority of that seems to be focused on me and my own struggles (though I would rather being the one to have to fight for these things and not either of my children, even though I am as deserving as they are of these benefits and services)…

There are a lot of things I hate about the federal disability system, but even more that I hate about Texas.

In hindsight, I should have expected this to happen.

I’m not sure what happened to Bub’s new computer last night, but I wound up having to reload half of it.

I am just now finishing up loading his games back onto it with it continuing to be hooked into the modem.

In the interim, I’ve been having more episodes of strabismus that normally coincide with me being at risk for having an epileptic seizure… except for the fact that they’re not happening (when I’m conscious, at any rate), but I am having a harder time focusing my eyes on things and feel more pressure in my head that is very distinctly not migraine pain. To be honest, I’m not sure I want to make a trade-off like this given what it sounds like it could be, because even the best of scenarios for symptoms like these are worse than anything else I currently have to deal with. The eye deviations happen when my glasses are on and when they are off, and I’ve begun to notice some asychronity in my pupillary sizes as well as rapid dilation and widening when I am in a stable light source. Some days, and times, are worse than others. But still. Can I not deal with this?

Dealing with the state is fun, and by that I mean…

So I found out the other day that I may actually be eligible for survivor’s benefits off of my oldest son’s father’s record, because our mutually shared son is disabled which negates the age and length of marriage requirement normally imposed on these benefits. It also means that as long as I exercise parental control over my son, to include managing his affairs once he becomes an adult, I am and should remain eligible for these benefits without interruption as long as I do not remarry. This wasn’t something that was originally brought up when I applied for survivor’s benefits on my oldest son’s behalf, seeing as how it was his father who had died. But since there remains this as a possibility, I’ve tried to get in touch with the state to ask about it to see if these benefits can be instated to me. Dealing with the government is always fun, though… and by that, what I really mean to say is not fun. This is something that should have been explored months ago when the application was first filed and information on our household was collected, but it was not.

I expect the state to slow-walk this as they have almost everything I’ve needed their assistance for, though.

Absolutely none of this surprises me now.

I’ve had a migraine for six days now that Fioricet has not touched, and Fioricet… usually does.

At the very least, it helps, enough for me to be seen by a member of my care team.

This is also the longest period of time in which I have had an active migraine in, well, ever.

If this doesn’t break sometime tomorrow, I’ll be asking my care team what they want me to do next.

Somehow I nearly managed to forget to post in this.

Things happen. Life happens. I’m going to be asking my psychiatrist to put me back on guanfacine, because months of Straterra (or however you spell it)… aren’t working. I have to put Post-It notes on my wall to remember to take the medication. It’s not working anywhere near as well as guanfacine did. And the whole point of ADHD medication is to allow you to be more attentive and less forgetful, which clearly is not happening in this case here. I aspire to fix this in about a month when I see my psychiatrist for a check-in.

A… friend of Bub’s father contacted me now that I’ve unblocked the majority of them to see what they would do, which I initially had mixed feelings over. But then we got to talking, and I told him some things that I intend on mentioning here at some point for the first time, and he understood where I was coming from when I understandably “took (Bub) and ran (from his father)”. There are some things that I want to get off of my chest after his upcoming birthday for the sake of doing so, even if that means “going public”, because all of it is the truth substantiated by my medical records. There’s so much that he took from me in 2009 that I intend on taking back. I want to tell the story of… what happened, and I want to do all of this on my terms.

And post-sepsis syndrome is still a whole mood.

I’m continuing to get better, but I’m plagued by the occasional intense tiredness (which results in me dragging during mornings, although I tend to do better during afternoons and evenings, though that varies wildly). Sometimes I’m also plagued by the inability to sleep, or to get restful sleep. It actually seems like restful sleep is harder to come by these days. I do want to begin streaming during the days in addition to during my usual evening and night hours once summer “officially” starts here, which should be next week when secondary schoolers don’t have to report to school. I’m close to figuring out when some of the best hours for me to do that might be, although I’m mindful of my own health as well and definitely don’t want to push things as I heal from sepsis. I’m told that healing can last anywhere from six to eighteen months, although sometimes it can last longer. It depends on how the dice is rolled, I guess. I’m hoping for good odds.

I also measured some of my son’s father (and late husband’s) cremation ashes to send overseas to have a cremation ring made in his honor. It was one of the hardest things that I’ve had to do, even though I’ll get “him” back in the strictest sense of the word. It’s just that these ashes are all I have of the man who gave me my oldest son. He should still be here. He shouldn’t have had to die at the age of thirty-seven. He shouldn’t have had to die on the side of the road because someone who was high and intoxicated insisted on driving that evening. When I found out about his death, I had initially thought that my oldest son and I were finally free of the potential for more abuse to be inflicted on us… and then I became filled with sorrow at the idea that I would potentially live thirty-seven more years without him drawing breath, being part of this world. There would be no chance for him to heal or get help. There would be no chance for him to repair his relationship with me or his son. But for the most part, I’m at peace with it. What else can you possibly do?

1 2 3 4 5 6 29