Just How Am I?
I have been posting important stuff from the news, but not much else. No real reason for this except that I don't have much to add about how I'm doing or feeling. However, this may be about to change.
After many stupid months were I was able to get no where in relation to a new medication to treat my sleep problems, I fired the prior provider and went back to my primary care provider. In about 26 hours he had the prescription the other doctor hadn't been able to get through the insurance company in the prior 5 ~ 6 months. So I got when I picked up my refills last weekend and started it last night.
As much as I'd like to be able to report the first night of this new treatment made all the difference and I can tell it's all going to get better, no such luck. However, after only a night - 1 dose - I can't tell much more than what it was like for me overnight.
I didn't fall immediately to sleep nor did I feel like I slept well or even better than I normally do. On the contrary, I felt like my sleep was much more disturbed -- it was almost like I was too hyper during sleep. My dreams were very vivid and for the first time in months I have a very strong reason to believe the hallucinations returned. Luckily it was nothing more than hearing sounds that were most likely no there (some I am 99% were not there and others were much harder for me to know one way or the other).
It's been clear that it's been months since I have any hallucinations (are that I've been aware of them - I can't really guarantee that I've NOT been having them). Mostly I hear things that don't exist -- a ringing phone, an animal sound, a knock on the door, a word spoken. Usually these sounds are most noticeable when going between sleeping and waking.
So what does this mean? While hallucinations are always a concern to me, it's just been a single night. They may not happen again, but I'm somewhat inclined to believe that it's a side affect of using this class of drugs (which I'm choosing not to record here at this time for personal reasons). It may not be the drug itself, but it may be related to that class of drug's interactions with my HAART (fka "the cocktail," a term many PWAs find offensive) and my own biologic system. It's hard to say and since we can't stop the HAART, it will be impossible to say though I might have a better guess when we next change my treatment. Who knows, it might mean I just can't take this class of drugs or will have to consider if their benefits outweigh the cost in terms of side effects.
So, with much more disturbed sleep and the return of hallucinations, I can't same I'm feeling terribly hopeful. I will continue to take the drugs for the next month or so before making any decisions unless I noticed nothing seeming like an improvement. I can't say I was as hopeful as I was two days ago, but let's say I'm guardedly hopeful.
Other than that, I continue to feel very tired and worn down. There is no improvement nor even change there yet. Mostly I just hang in there, waiting to see what comes next.
As for other information about my health, recent lab tests were mixed. I have very little active virus in my system and this has remained roughly the same throughout the year. However, my immune system seemed a bit weaker during the last test. This doesn't really mean anything by itself and won't until the numbers continue to decline over a series of test (done quarterly or so) or stay consistently below a given number. However, I would say that this number falls close to my average since I've been on treatment.
So that's a way that someone can say an awful lot about something that really hasn't changed much since the last time it was written about.
The one thing I can say is I seem to be reading more these days. I'm actually surprising myself at how quickly I'm going through large print novels. That's a good thing and I do enjoy it for the most part. I find myself wondering if I would watch at much TV if I could get more in large type.
Rob's fine. His overall skin health is much better. I think substituting canned food for some dry has made the difference. I do need to do something about the back though because he gets stuff between his toes and this seems to cause irritation and sores now. But we are moving in the correct direction.
That's about all I've got. I'm not working in the garden much though it isn't dying off as quickly as I'd imagined. Actually, the mums are gorgeous and I don't think anything died off because of the near freezing temperatures earlier in the week. I think between the building and the asphalt, my little garden stayed above freezing. So that's good but I do kind of wish I had the energy to spend a bit more time outside.
I'm also looking forward to a visit from family over the Thanksgiving holidays. I'm trying to get the house in order for that without stressing my body too much. I think it will be okay, and the hardest thing will be to NOT do things the couple of days before they arrive. However, I think that will be critical so that I am not too tired during their visit. It's going to be hard to not do all the things I will want to do while they are here, but that's just the way it is.
And so that's about the state of me at present.
After many stupid months were I was able to get no where in relation to a new medication to treat my sleep problems, I fired the prior provider and went back to my primary care provider. In about 26 hours he had the prescription the other doctor hadn't been able to get through the insurance company in the prior 5 ~ 6 months. So I got when I picked up my refills last weekend and started it last night.
As much as I'd like to be able to report the first night of this new treatment made all the difference and I can tell it's all going to get better, no such luck. However, after only a night - 1 dose - I can't tell much more than what it was like for me overnight.
I didn't fall immediately to sleep nor did I feel like I slept well or even better than I normally do. On the contrary, I felt like my sleep was much more disturbed -- it was almost like I was too hyper during sleep. My dreams were very vivid and for the first time in months I have a very strong reason to believe the hallucinations returned. Luckily it was nothing more than hearing sounds that were most likely no there (some I am 99% were not there and others were much harder for me to know one way or the other).
It's been clear that it's been months since I have any hallucinations (are that I've been aware of them - I can't really guarantee that I've NOT been having them). Mostly I hear things that don't exist -- a ringing phone, an animal sound, a knock on the door, a word spoken. Usually these sounds are most noticeable when going between sleeping and waking.
So what does this mean? While hallucinations are always a concern to me, it's just been a single night. They may not happen again, but I'm somewhat inclined to believe that it's a side affect of using this class of drugs (which I'm choosing not to record here at this time for personal reasons). It may not be the drug itself, but it may be related to that class of drug's interactions with my HAART (fka "the cocktail," a term many PWAs find offensive) and my own biologic system. It's hard to say and since we can't stop the HAART, it will be impossible to say though I might have a better guess when we next change my treatment. Who knows, it might mean I just can't take this class of drugs or will have to consider if their benefits outweigh the cost in terms of side effects.
So, with much more disturbed sleep and the return of hallucinations, I can't same I'm feeling terribly hopeful. I will continue to take the drugs for the next month or so before making any decisions unless I noticed nothing seeming like an improvement. I can't say I was as hopeful as I was two days ago, but let's say I'm guardedly hopeful.
Other than that, I continue to feel very tired and worn down. There is no improvement nor even change there yet. Mostly I just hang in there, waiting to see what comes next.
As for other information about my health, recent lab tests were mixed. I have very little active virus in my system and this has remained roughly the same throughout the year. However, my immune system seemed a bit weaker during the last test. This doesn't really mean anything by itself and won't until the numbers continue to decline over a series of test (done quarterly or so) or stay consistently below a given number. However, I would say that this number falls close to my average since I've been on treatment.
So that's a way that someone can say an awful lot about something that really hasn't changed much since the last time it was written about.
The one thing I can say is I seem to be reading more these days. I'm actually surprising myself at how quickly I'm going through large print novels. That's a good thing and I do enjoy it for the most part. I find myself wondering if I would watch at much TV if I could get more in large type.
Rob's fine. His overall skin health is much better. I think substituting canned food for some dry has made the difference. I do need to do something about the back though because he gets stuff between his toes and this seems to cause irritation and sores now. But we are moving in the correct direction.
That's about all I've got. I'm not working in the garden much though it isn't dying off as quickly as I'd imagined. Actually, the mums are gorgeous and I don't think anything died off because of the near freezing temperatures earlier in the week. I think between the building and the asphalt, my little garden stayed above freezing. So that's good but I do kind of wish I had the energy to spend a bit more time outside.
I'm also looking forward to a visit from family over the Thanksgiving holidays. I'm trying to get the house in order for that without stressing my body too much. I think it will be okay, and the hardest thing will be to NOT do things the couple of days before they arrive. However, I think that will be critical so that I am not too tired during their visit. It's going to be hard to not do all the things I will want to do while they are here, but that's just the way it is.
And so that's about the state of me at present.
posted by xj at 4:57 PM
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