Posts Tagged ‘disability’

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?

Post-sepsis syndrome is a whole mood, folks.

Healing from septic shock is a whole process, and not one I would wish on anyone.

Right now I am dealing with the ingratiating tiredness, especially as it pervades my mornings. When I feel this way, naps aren’t refreshing and they tend not to help. Caffeine doesn’t help either, even though I am a frequent connoisseur of a bit of it every day. I start feeling less tired as the afternoon approaches, and by night time for the most part I feel how I suppose I should have felt in the mornings. It’s also ingratiating because there are things that I want to do, to get done, that I have to slog through with every bit of me or put off because I know I’m too tired to do them. But I know that the alternative would have been me not being here, and so I am exceedingly thankful to be alive, even though sometimes I feel like I got hit by a truck.

I’m having my engagement and wedding ring (little known fact: I was married to my oldest son’s father) recast, because the alloy in my previous ring caused me to have allergic reactions whenever I tried to wear it, and constantly coating it with clear nail polish to make it wearable was onerous and didn’t quite work.

I am slowly but surely getting better from this.

As I’m sure I’ve mentioned in previous posts, post-sepsis syndrome is a very real… thing that I’ve had since I began to get over sepsis, although it didn’t make itself as abundantly clear when I was discharged from the hospital. I didn’t quite feel like I was walking on water then, but I felt better than I did… I don’t want to say now, because I do feel better now, but for awhile leading up to now. It’s been a process that I’ve had to coast off of with the medications that I’ve been prescribed for pain and nausea, and justifiably so. I’ve had more migraines than I normally have, which hasn’t surprised me one bit. I’ve been in more systemic, body-wide pain than I thought I would be. Nausea has been kicking me in the tail end, although Pepto Bismol has been an absolute godsend allowing me to keep down necessary medications, working my way up to actual food.

I remain ever thankful to be here, even though some of the symptoms that I have to deal with have been difficult, or profoundly difficult, some of the time. Pain I can deal with. Pain is always something I’ve been able to soldier through. Nausea, on the other hand, has not been something that I have been able to deal with well. Or sufficiently, for that matter. Sickness, of course, remains miserable, solely mine to deal with….

I am how many days out from surgery now?

I suppose I’ll come back here and write about it in more extravagant detail as I continue to heal, am in less discomfort, and have more energy, but in the interim I’ve been editing videos from raw footage that I’ve had on hand to give myself something to do with the downtime that healing from surgery entails. This is fun!

I am continually surprising myself finding that video editing, at least in my experience, is much like riding a bicycle. I was my high school’s daily show’s senior editor and… became so fairly quickly through being the fastest typist and most adept with the computers that the early 2000s allowed us to have on hand, although I hate to make that comparison because repeated seizures have taken some of the things away from me that some of you reading this might take at least a little bit for granted. My sense of direction is absolutely shot to hell, and I get disoriented and lost in places that I do not constantly frequent extremely easy now.

I am so excited for what is coming up soon!

So, news: not only was I successful at getting insurance in Texas to approve a tubal ligation (namely the removal of my Fallopian tubes), but that will actually be happening soon enough to post about it here!

I am in the process of weaning off of certain medications of mine to stop taking them in preparation for that, because I don’t want to give anesthetists any more of a reason to be clinically frustrated with me than I’m sure they are by virtue of my red hair making it difficult to knock me out when I need to be knocked out. I’ve read my medical files from the radiofrequency ablations that I’ve had for my migraines, and my care team is very aware of the difficulty at which it is to knock me out (“knock me out”? how do you phrase that?), owing to the fact that they are aware of my natural hair color in addition to whatever proclivities I naturally have.

And by that, I mean whatever other proclivities I naturally have. I’m very much aware of the hair color thing.

I am immensely frustrated at my gynecologist even though he’s the one performing the operation because he underestimates the level of anxiety that certain things give me, and coupled with the increasing difficulty at getting an IV started in me that has only gotten so much worse over the years, maybe I need to consider finding a gynecologist who takes my needs seriously. I don’t think I have enough time to ask my psychiatrist for anything although I concede that I very well should have, so I’ll just repeatedly ask the outpatient wing of the hospital where this will be performed to give me Versed before they give me propofol… or maybe even something stronger than that. I’m normally given Versed before propofol for radiofrequency ablations now.

1 4 5 6 7 8 35