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Wow. Where to start?
Jul. 29th, 2012 05:14 pmLife has been extraordinarily busy, with an combination of intensely good and intensely bad, and a combination of "appropriate for LJ" and "not appropriate for LJ" issues. So, I guess, heads up for those of you close enough to me to want to know when I'm dealing with big intense stuff -- at the moment LJ is not going to be the full story.
The overall result has been a week full of chaos, stress, and the need to be able to be rock-solid emotional support. Those of you I've contacted to support me so I could in turn be that kind of support, my deepest gratitude to you. Although things are currently more at a "hold, recuperate, re-approach" point rather than a "resolved" point (and Gmail's draft function eating six hours of work composing REALLY didn't help!), I think they can improve from here, and I see concrete directions for possible progress.
To alleviate any concerns, none of this has to do with any problems between me and Chad, or between me and the housemates, or even with my work (although all were affected in various ways). It's an external but deeply important issue. All of the above are solid and generally full of awesome. Chad and I, especially, are more together and more solid than we ever have been, and that's not generally in doubt even on our worst days. We've been handling a lot of stress together, and it's just making it clearer how we function, how we trust each other, and how strong we are as a team. I've also been able to reach out to his other sweetie for support, and it's one of those times I'm so extra-glad to be poly.
My health has been pretty crappy, unsurprisingly. Stress triggers flares, so that's just the way of life, basically. Additionally, I've been having some problems I need to be sure to discuss with my GP on Wednesday when I see her. They may be side-effects of the new meds, they may be unrelated (but probably with several it's much more likely that they're related to the trileptal). Blurred vision. Driving me up the wall, and one of the more serious, but also more common, side effects of trileptal. I'm really hoping not to have to switch back off it, so I'm hoping it's something that'll improve with time. Really, really irritating now, though. Rash/eczema. Painful and itchy, and variable from day to day. Primarily on the backs of my hands and my forehead, but with minor appearances further up my arms and elsewhere off and on. I have a long history of rashes and hives and dyshydrotic eczema on my hands and occasionally my feet, so I'm _really_ hoping this one is unrelated to the trileptal. I double-checked the symptoms to make sure, and it definitely doesn't seem at all like Stevens-Johnson Syndrome, which is the one that scares the hell out of docs and generally leads them to dump folks off meds that can cause it if any sort of rash appears. No mouth or other mucous membrane involvement at all, though, so I'm feeling pretty safe on that front, especially since it seems like nothing more than a worsening of symptoms I previously had long before this med. Possibly relatedly, it feels like my other meds that were doing so well for my fibro pain and symptoms have been less efficacious since the trileptal. I've definitely been having a lot more deep joint pain again, which had been almost entirely under control for a while with the new regimen. Not sure what's going on there, if it's a lastly effect of the trileptal or I've just adjusted to those meds enough that I don't get the same benefit as when I was newly on them, but it kind of sucks and needs to be addressed. Two steps forward psych-wise leading to a step backward fibrowise. Argh. Similarly although more explanably, I'm back to struggling a lot with fatigue again even with the additional of the provigil. The trileptal causes fatigue and drowsiness, though, so that's not exactly surprising. I have concerns about upping the provigil dose and ending up back dealing with more mania again in some kind of round robin from hell, but we might need to carefully do that.
This weekend, however, was a wonderful break from all the stress and a great relaxed time with Chad and Kidlet. We had an absolutely fantastic time together, and I have lots to write about sing-a-long songs and our trip to Unique and some of our craft plans, and fun watching the Olympics (Kidlet now firmly believes umbrellas are the best tools for chasing off monsters; as a long-time Mary Poppins fan I'm entirely happy about this). That'll be its own post.
Additionally, I've had some minor revelations of my own this weekend. One has to do with a long-time friend I really still feel a need to explicitly make amends with, and I'll be addressing that soon privately. The other is something kind of amazing for me. I'm singing out loud again. Sometime in my teens I lost all my confidence in singing aloud, even in large groups. Its been something that has weighed on me for years, and been one of my biggest personal fears to overcome, and well as a deep personal grief, given my view on the voice as everyone's rightful instrument and tool for joy. Although I never pursued it, I've often dreamt of setting aside time and guts to work with a private vocal coach just to get over that fear enough to sing acceptably well in group situations. Something happened this weekend, mostly because of singing with Kidlet. I've hit a major turning point, it seems. I'm still pretty stunned about the changes in my own fear level, especially at the ripe old age of 37, and there will be a separate post about this, too. I know it's something a lot of people take for granted, but for me this is really, really huge. Today during break I actually had the guts to record myself singing, probably for the first time in my adult life. _And_ the guts to send the recording to my parents, at least. Seriously. Big stuff for me. Joyful stuff for me. Great gratitude to Kidlet for triggering this.
The overall result has been a week full of chaos, stress, and the need to be able to be rock-solid emotional support. Those of you I've contacted to support me so I could in turn be that kind of support, my deepest gratitude to you. Although things are currently more at a "hold, recuperate, re-approach" point rather than a "resolved" point (and Gmail's draft function eating six hours of work composing REALLY didn't help!), I think they can improve from here, and I see concrete directions for possible progress.
To alleviate any concerns, none of this has to do with any problems between me and Chad, or between me and the housemates, or even with my work (although all were affected in various ways). It's an external but deeply important issue. All of the above are solid and generally full of awesome. Chad and I, especially, are more together and more solid than we ever have been, and that's not generally in doubt even on our worst days. We've been handling a lot of stress together, and it's just making it clearer how we function, how we trust each other, and how strong we are as a team. I've also been able to reach out to his other sweetie for support, and it's one of those times I'm so extra-glad to be poly.
My health has been pretty crappy, unsurprisingly. Stress triggers flares, so that's just the way of life, basically. Additionally, I've been having some problems I need to be sure to discuss with my GP on Wednesday when I see her. They may be side-effects of the new meds, they may be unrelated (but probably with several it's much more likely that they're related to the trileptal). Blurred vision. Driving me up the wall, and one of the more serious, but also more common, side effects of trileptal. I'm really hoping not to have to switch back off it, so I'm hoping it's something that'll improve with time. Really, really irritating now, though. Rash/eczema. Painful and itchy, and variable from day to day. Primarily on the backs of my hands and my forehead, but with minor appearances further up my arms and elsewhere off and on. I have a long history of rashes and hives and dyshydrotic eczema on my hands and occasionally my feet, so I'm _really_ hoping this one is unrelated to the trileptal. I double-checked the symptoms to make sure, and it definitely doesn't seem at all like Stevens-Johnson Syndrome, which is the one that scares the hell out of docs and generally leads them to dump folks off meds that can cause it if any sort of rash appears. No mouth or other mucous membrane involvement at all, though, so I'm feeling pretty safe on that front, especially since it seems like nothing more than a worsening of symptoms I previously had long before this med. Possibly relatedly, it feels like my other meds that were doing so well for my fibro pain and symptoms have been less efficacious since the trileptal. I've definitely been having a lot more deep joint pain again, which had been almost entirely under control for a while with the new regimen. Not sure what's going on there, if it's a lastly effect of the trileptal or I've just adjusted to those meds enough that I don't get the same benefit as when I was newly on them, but it kind of sucks and needs to be addressed. Two steps forward psych-wise leading to a step backward fibrowise. Argh. Similarly although more explanably, I'm back to struggling a lot with fatigue again even with the additional of the provigil. The trileptal causes fatigue and drowsiness, though, so that's not exactly surprising. I have concerns about upping the provigil dose and ending up back dealing with more mania again in some kind of round robin from hell, but we might need to carefully do that.
This weekend, however, was a wonderful break from all the stress and a great relaxed time with Chad and Kidlet. We had an absolutely fantastic time together, and I have lots to write about sing-a-long songs and our trip to Unique and some of our craft plans, and fun watching the Olympics (Kidlet now firmly believes umbrellas are the best tools for chasing off monsters; as a long-time Mary Poppins fan I'm entirely happy about this). That'll be its own post.
Additionally, I've had some minor revelations of my own this weekend. One has to do with a long-time friend I really still feel a need to explicitly make amends with, and I'll be addressing that soon privately. The other is something kind of amazing for me. I'm singing out loud again. Sometime in my teens I lost all my confidence in singing aloud, even in large groups. Its been something that has weighed on me for years, and been one of my biggest personal fears to overcome, and well as a deep personal grief, given my view on the voice as everyone's rightful instrument and tool for joy. Although I never pursued it, I've often dreamt of setting aside time and guts to work with a private vocal coach just to get over that fear enough to sing acceptably well in group situations. Something happened this weekend, mostly because of singing with Kidlet. I've hit a major turning point, it seems. I'm still pretty stunned about the changes in my own fear level, especially at the ripe old age of 37, and there will be a separate post about this, too. I know it's something a lot of people take for granted, but for me this is really, really huge. Today during break I actually had the guts to record myself singing, probably for the first time in my adult life. _And_ the guts to send the recording to my parents, at least. Seriously. Big stuff for me. Joyful stuff for me. Great gratitude to Kidlet for triggering this.
