In the three days since my last entry I've had two bad days, and one so-so day.
Tuesday found me feeling pretty much like I had all day Monday. In other words, lots of nausea, increased dizziness, steady headache, etc. The whole day just sort of came and went.
Wednesday I actually had a so-so day. The nausea was decreased until the late evening, the headache was controlled with Tylenol, the dizziness eased up enough to where I didn't feel like falling over every time I walked, and I was somewhat comfortable for most of the day. I'll take that!
Today is a nearly complete reversal of yesterday. Last night (late) I ended up taking a half dose of the anti-emetic. This helped the nausea that had significantly increased after my one meal, but didn't take it away--not even close. I ended up taking the other half dose a few hours later after not being able to sleep because of the nausea.
I got some great sleep (as is usual with that med), but awoke feeling groggy, nauseated (again!) and having a headache of 7. Since waking, the nausea has increased--I'm trying to hold out taking the anti-emetic--, and the headache has, too. Additionally, the dizziness has ramped up as well, and I am extremely unsteady on my feet.
My food intake has been poor today, and I have drunk almost no water. All in all, today has been a pretty bad day.
As I've already stated, my next Nephrology appt is this coming Monday (23 Aug). I'll be taking my usual list of things to tell my doc--something he is very pleased with (apparently most patients don't do this and try to remember, but fail to give him all relevant info). I'll write about the latest findings either Monday or Tuesday.
Have a great weekend, everyone!
Good Health to All!
ScottW
Thursday, August 19, 2010
Monday, August 16, 2010
16 Aug. 10
Had my blood drawn for my next nephrology appointment.
Besides the CBC and Renal Panel, I had orders for a Parathyroid Check and a Urinalysis. As usual, I asked to see my blood. To me, it looked darker than it has been, and cloudy.
Let's see...my last entry was about waking up Saturday morning with overwhelming nausea. After the anti-emetic wore off, the nausea returned (though not as severe as earlier), and I felt completely drained. I ate one small meal all day which consisted of about 2 cups of noodles, and a little cheese. After I ate, I regretted it for the rest of the night as the nausea bumped up its intensity. Took a half dose of the Rx anti-emetic, which helped, but did NOT take it away.
That stuck with me all day Sunday. LOTS of nausea, increased headache, eating almost nothing. Like Saturday, my "dinner" (and I use that term very loosely--more like...my one meal) set off intense nausea. Again, a half dose of the med helped; but certainly didn't take it away. Also, on Sunday I had five bouts of diarrhea; which is unusual as of late.
Today has been slightly better. The nausea (in and of itself) is decreased. However, I have been extremely dizzy most of the day and any sudden looking around brings waves of nausea. So, guess where I've been looking as much as possible...Straight ahead.
Something I find fascinating is how, with as tired and sick as I've been the last ten months, I find that the resilience of the mind is most incredible. You would think that my physical and mental fatigue would cause me to lose hope, and see only the negative. But, that's not me; not who I am. So I find strength that I did not know existed to bring peace to my mind, and hope to my heart. It's like, the longer I go, the more strength that is needed is always there. I don't know if it is faith on my part, the prayers of others, inherent strength of the human brain, or a combination of all three as well as other factors.
Whatever it is that is helping to lift and sustain me, I am grateful every day for it being there. Without it, I would be in a far worse place both mentally and physically.
That's all I've got for today. Thank you, my readers, for your continued interest and support as I travel this journey. I appreciate every one of you!
Good Health to All!
ScottW
Besides the CBC and Renal Panel, I had orders for a Parathyroid Check and a Urinalysis. As usual, I asked to see my blood. To me, it looked darker than it has been, and cloudy.
Let's see...my last entry was about waking up Saturday morning with overwhelming nausea. After the anti-emetic wore off, the nausea returned (though not as severe as earlier), and I felt completely drained. I ate one small meal all day which consisted of about 2 cups of noodles, and a little cheese. After I ate, I regretted it for the rest of the night as the nausea bumped up its intensity. Took a half dose of the Rx anti-emetic, which helped, but did NOT take it away.
That stuck with me all day Sunday. LOTS of nausea, increased headache, eating almost nothing. Like Saturday, my "dinner" (and I use that term very loosely--more like...my one meal) set off intense nausea. Again, a half dose of the med helped; but certainly didn't take it away. Also, on Sunday I had five bouts of diarrhea; which is unusual as of late.
Today has been slightly better. The nausea (in and of itself) is decreased. However, I have been extremely dizzy most of the day and any sudden looking around brings waves of nausea. So, guess where I've been looking as much as possible...Straight ahead.
Something I find fascinating is how, with as tired and sick as I've been the last ten months, I find that the resilience of the mind is most incredible. You would think that my physical and mental fatigue would cause me to lose hope, and see only the negative. But, that's not me; not who I am. So I find strength that I did not know existed to bring peace to my mind, and hope to my heart. It's like, the longer I go, the more strength that is needed is always there. I don't know if it is faith on my part, the prayers of others, inherent strength of the human brain, or a combination of all three as well as other factors.
Whatever it is that is helping to lift and sustain me, I am grateful every day for it being there. Without it, I would be in a far worse place both mentally and physically.
That's all I've got for today. Thank you, my readers, for your continued interest and support as I travel this journey. I appreciate every one of you!
Good Health to All!
ScottW
Saturday, August 14, 2010
14 Aug. 10
A new first today.
For the first time, I was awoken out of a dead sleep with overwhelming nausea.
Without any hesitation I took the full dose Rx anti-emetic. It took a about 45 minutes to be effective. I presume it took that long simple because of how intense the nausea was. Once it was working, I slept another eight hours.
I've now been awake for a while, and still feel yuck; but I'll take that over how I felt when I was awakened earlier today. I also awoke with a headache of about an 8. Again, I'll take that over the nausea.
Good Health to All!
ScottW
For the first time, I was awoken out of a dead sleep with overwhelming nausea.
Without any hesitation I took the full dose Rx anti-emetic. It took a about 45 minutes to be effective. I presume it took that long simple because of how intense the nausea was. Once it was working, I slept another eight hours.
I've now been awake for a while, and still feel yuck; but I'll take that over how I felt when I was awakened earlier today. I also awoke with a headache of about an 8. Again, I'll take that over the nausea.
Good Health to All!
ScottW
Thursday, August 12, 2010
12 Aug. 10
Two more days of the same.
While I did feel a little better on Tuesday, yesterday was a terrible day. Though my nausea wasn't uncontrollable, I felt downright horrible all day. I ate two pieces of toast all day. The nausea was so persistent that I just didn't want to eat. Additionally, my headache held steady at a 7 from the time I awoke until I went to sleep. I didn't even drink any water (aside from taking my meds) until about 11p. Anything I put in my stomach only intensified the nausea. My energy level all day was, ummm, pretty much non-existent. NOT a good day by any stretch.
Then last night as I slept, I was restless. I awoke a number of times, and felt like I still needed sleep after eight hours. Further, I awoke with my headache at an 8. Yeah...that was fun to wake up to.
This morning the nausea had backed off. I had energy again, and used it up doing housework. I began getting more nausea in the middle of my chores, so I finished up. As of this writing I still have not eaten today. Not hungry, and not willing to increase the nausea right now.
What else...
The edema in my legs is back to its new normal. 2+ on color and 5+ on rebound.
My urinary output remains down. Part of that has to do with my not drinking enough water. I'm trying to remember to drink more. On the other side of that coin, drinking more water will likely increase the edema in my legs. It's a no win scenario either way. However, the danger of dehydrating my remaining kidneys is diminished if I drink more. I don't want to trash what's left of my kidneys, so I'll continue to try to do better about consuming water.
I'll be doing a blood draw next Monday in advance of my upcoming nephrologist appointment on the 23rd. In addition to the normal labs, I am also doing a urinalysis and a parathyroid check.
That's about all for today. I believe I've remembered everything today. (???)
Good Health to All!
ScottW
While I did feel a little better on Tuesday, yesterday was a terrible day. Though my nausea wasn't uncontrollable, I felt downright horrible all day. I ate two pieces of toast all day. The nausea was so persistent that I just didn't want to eat. Additionally, my headache held steady at a 7 from the time I awoke until I went to sleep. I didn't even drink any water (aside from taking my meds) until about 11p. Anything I put in my stomach only intensified the nausea. My energy level all day was, ummm, pretty much non-existent. NOT a good day by any stretch.
Then last night as I slept, I was restless. I awoke a number of times, and felt like I still needed sleep after eight hours. Further, I awoke with my headache at an 8. Yeah...that was fun to wake up to.
This morning the nausea had backed off. I had energy again, and used it up doing housework. I began getting more nausea in the middle of my chores, so I finished up. As of this writing I still have not eaten today. Not hungry, and not willing to increase the nausea right now.
What else...
The edema in my legs is back to its new normal. 2+ on color and 5+ on rebound.
My urinary output remains down. Part of that has to do with my not drinking enough water. I'm trying to remember to drink more. On the other side of that coin, drinking more water will likely increase the edema in my legs. It's a no win scenario either way. However, the danger of dehydrating my remaining kidneys is diminished if I drink more. I don't want to trash what's left of my kidneys, so I'll continue to try to do better about consuming water.
I'll be doing a blood draw next Monday in advance of my upcoming nephrologist appointment on the 23rd. In addition to the normal labs, I am also doing a urinalysis and a parathyroid check.
That's about all for today. I believe I've remembered everything today. (???)
Good Health to All!
ScottW
Tuesday, August 10, 2010
10 Aug. 10
In the three full days since my last entry, things have gone downhill.
All day Saturday I was just feeling blah. No energy, not much laughter. Though I wasn't overly nauseated, nor had a terrible headache--I just was completely non-energetic. I did eat a bit more than usual; which is good. Considering how little I've been ingesting, eating more on Saturday was definitely a good thing.
Sunday started out the exact same way. However, as the day progressed, the S/S's began ramping up once again. By the afternoon I was nauseated enough to take the Rx anti-emetic. Again, it took away the nausea; but left me feeling yuck. Additionally, my headache had increased dramatically by the evening, going from a six up to a 9.5. Because of the headache and the nausea I ate very little once more. By the time I went to bed Sunday night I had only had about 2.5 cups of food, plus minimal liquids.
Monday found my S/S's staying pretty much the same. Let's see...Intense headache all day (about an 8); uncontrollable nausea (took another Rx anti-emetic); zero appetite; zero energy; extremely tired, decreased urinary output, etc. In spite of feeling like this, the edema in my legs actually looks less today than it has in a while. Fascinating how that happens.
I have also begun to feel cold again. It started about a week ago. Just once in a while at first; but now, I'm getting cold throughout the day once more. This in spite of my local temps being in the 90's. Yes, I'm in AC during the day; but it is set at 72 degrees. I'm getting shivers in a 72 degree room.
(Five minutes later...) There was something else I was going to say, but I just can't think of what it was. I remember it was important, but...
Nope. Not there. I can't think of it. IF I remember it, I'll add it on to the end on this entry.
Good Health to All!
ScottW
All day Saturday I was just feeling blah. No energy, not much laughter. Though I wasn't overly nauseated, nor had a terrible headache--I just was completely non-energetic. I did eat a bit more than usual; which is good. Considering how little I've been ingesting, eating more on Saturday was definitely a good thing.
Sunday started out the exact same way. However, as the day progressed, the S/S's began ramping up once again. By the afternoon I was nauseated enough to take the Rx anti-emetic. Again, it took away the nausea; but left me feeling yuck. Additionally, my headache had increased dramatically by the evening, going from a six up to a 9.5. Because of the headache and the nausea I ate very little once more. By the time I went to bed Sunday night I had only had about 2.5 cups of food, plus minimal liquids.
Monday found my S/S's staying pretty much the same. Let's see...Intense headache all day (about an 8); uncontrollable nausea (took another Rx anti-emetic); zero appetite; zero energy; extremely tired, decreased urinary output, etc. In spite of feeling like this, the edema in my legs actually looks less today than it has in a while. Fascinating how that happens.
I have also begun to feel cold again. It started about a week ago. Just once in a while at first; but now, I'm getting cold throughout the day once more. This in spite of my local temps being in the 90's. Yes, I'm in AC during the day; but it is set at 72 degrees. I'm getting shivers in a 72 degree room.
(Five minutes later...) There was something else I was going to say, but I just can't think of what it was. I remember it was important, but...
Nope. Not there. I can't think of it. IF I remember it, I'll add it on to the end on this entry.
Good Health to All!
ScottW
Friday, August 6, 2010
06 Aug. 10
Rough few days.
Since my last entry [on the 3rd], things have been mostly down for me. LOTS of nausea happening. Lots. I'm able to control it...barely. Yesterday I was withing a few minutes of taking my prescription anti-emetic when things finally decided to back off a little.
Also, lots of dizziness happening.In the last three days alone I think I've stopped myself from [potentially] falling around forty times, or so; and that is not an exxageration.
What else....
My appetite has been virtually nil. Between the nausea and the disease, I don't want any food. I know that this is exacerbating multiple symptoms, and I'm trying to at least snack; but I open the cabinets and refrigerator, stare at what's inside, and then just turn away with some sort of variation on, "Yuck."
Even my water consumption has dropped this week. Yes, I've still got the water right next to me nearly all the time; but I'll go hours without even thinking about needing to drink.
In spite of my lack of water, the edema in my legs seems to be getting a little worse. The other day I had one leg crossed over the other, and an empty glass resting against my shin for five or ten minutes. When I removed it, there was a large indent in my leg that actually stayed there for around 20 minutes before it was no longer noticeable. I did a pressure test on multiple points of both legs. The results:
Feet-- Color 2+ Rebound avg 10+
Ankles-- Color 2+ Rebound avg 7+
Shins-- Color 2+ Rebound avg 5+
Below Knees-- Color 1+ Rebound avg 2.5+ *All of these number definitely signal a large increase of the edema in my lower legs; particularly the ankles and feet.
I remain exceptionally tired all of the time. As I stated before, even after a decent night of sleep, I'll just drag all day. The brief spurts of energy I do experience I use to get things done around the house, and get personal grooming/bathing done.
I had a friend tell me a few days ago that my blogs are really reflecting how tired and worn out I am. I told her that I'm trying to NOT put that across in my blogs; but just remain factual. So, I will take her reminder for what it was intended--as a kind observation that has told me I need to be more positive, more "up." Like I am at home, some days will be better than others. In light of that, I will always write the best I can. After all, part of the reason I am writing these blogs is as a reminder to myself about what is important, and what I need to be focusing on and addressing within myself as I travel this path.
So to her I say, Thank You for the reminder. I will do better.
Good Health to All!
ScottW
Since my last entry [on the 3rd], things have been mostly down for me. LOTS of nausea happening. Lots. I'm able to control it...barely. Yesterday I was withing a few minutes of taking my prescription anti-emetic when things finally decided to back off a little.
Also, lots of dizziness happening.In the last three days alone I think I've stopped myself from [potentially] falling around forty times, or so; and that is not an exxageration.
What else....
My appetite has been virtually nil. Between the nausea and the disease, I don't want any food. I know that this is exacerbating multiple symptoms, and I'm trying to at least snack; but I open the cabinets and refrigerator, stare at what's inside, and then just turn away with some sort of variation on, "Yuck."
Even my water consumption has dropped this week. Yes, I've still got the water right next to me nearly all the time; but I'll go hours without even thinking about needing to drink.
In spite of my lack of water, the edema in my legs seems to be getting a little worse. The other day I had one leg crossed over the other, and an empty glass resting against my shin for five or ten minutes. When I removed it, there was a large indent in my leg that actually stayed there for around 20 minutes before it was no longer noticeable. I did a pressure test on multiple points of both legs. The results:
Feet-- Color 2+ Rebound avg 10+
Ankles-- Color 2+ Rebound avg 7+
Shins-- Color 2+ Rebound avg 5+
Below Knees-- Color 1+ Rebound avg 2.5+ *All of these number definitely signal a large increase of the edema in my lower legs; particularly the ankles and feet.
I remain exceptionally tired all of the time. As I stated before, even after a decent night of sleep, I'll just drag all day. The brief spurts of energy I do experience I use to get things done around the house, and get personal grooming/bathing done.
I had a friend tell me a few days ago that my blogs are really reflecting how tired and worn out I am. I told her that I'm trying to NOT put that across in my blogs; but just remain factual. So, I will take her reminder for what it was intended--as a kind observation that has told me I need to be more positive, more "up." Like I am at home, some days will be better than others. In light of that, I will always write the best I can. After all, part of the reason I am writing these blogs is as a reminder to myself about what is important, and what I need to be focusing on and addressing within myself as I travel this path.
So to her I say, Thank You for the reminder. I will do better.
Good Health to All!
ScottW
Monday, August 2, 2010
02 Aug 10
(Remember--the experiences I am writing about are mine alone. How anyones body reacts to a disease such as PCKD is a purely individual thing. Someone else with the same disease at the same stage could feel like they are completely healthy. So please, be sure you are consulting with your physician about your symptoms and experiences.)
NOT a good weekend [for me].
I awoke Saturday feeling so-so; but then began feeling worse as my day progressed. By late Saturday, the nausea was far worse than normal, but still controllable. My headache had also ramped up to an 8, and I had a general feeling of malaise that I have only been experiencing infrequently. In addition, I also had several bouts of diarrhea; which, as you know, has been happening less and less.
Throughout the night the nausea increased until I decided I had to take the prescription anti-emetic, or start vomiting. Once I took that, another 30-45 grueling, terrible minutes passed before the nausea began to dissipate. I was finally able to get to sleep around 830a on Sunday.
I slept until nearly 4p, and then felt like I had to force myself out of bed--for all the good that did. Just like the last time I took the anti-emetic, the after-effects lasted a number of hours. I wasn't nauseated, nor did I have a headache (though I DID have more diarrhea)...I just felt fuzzy or woozy for hours. YUCK! The med definitely did its job; but I still hate the way it makes me feel so long after taking it. My Sunday sort of came and went without much notice on my part.
When I awoke today, the nausea is back to its [new] normal level, the headache is ever-present, and my body is still feeling blah. No energy whatsoever. Since Saturday afternoon I've eaten around four to five cups of food. BTW-food is ever increasingly just something that is there. Everything just tastes so-so. Nothing is appealing anymore; so I'm eating because I need to eat--occasionally because I'm actually hungry.
In case anybody is wondering about my smelling ammonia...yes, the odor is always present, and I will still have its taste in my mouth once in a while. It's now been around so long I rarely take conscious notice of it. It's always there, though. I have times where it will suddenly assault my senses and I will be very aware of it.
Let's see...I know there was one or two more things I wanted to say; but I can't remember what they were. So, that's all, I guess.
Good Health to All!
ScottW
NOT a good weekend [for me].
I awoke Saturday feeling so-so; but then began feeling worse as my day progressed. By late Saturday, the nausea was far worse than normal, but still controllable. My headache had also ramped up to an 8, and I had a general feeling of malaise that I have only been experiencing infrequently. In addition, I also had several bouts of diarrhea; which, as you know, has been happening less and less.
Throughout the night the nausea increased until I decided I had to take the prescription anti-emetic, or start vomiting. Once I took that, another 30-45 grueling, terrible minutes passed before the nausea began to dissipate. I was finally able to get to sleep around 830a on Sunday.
I slept until nearly 4p, and then felt like I had to force myself out of bed--for all the good that did. Just like the last time I took the anti-emetic, the after-effects lasted a number of hours. I wasn't nauseated, nor did I have a headache (though I DID have more diarrhea)...I just felt fuzzy or woozy for hours. YUCK! The med definitely did its job; but I still hate the way it makes me feel so long after taking it. My Sunday sort of came and went without much notice on my part.
When I awoke today, the nausea is back to its [new] normal level, the headache is ever-present, and my body is still feeling blah. No energy whatsoever. Since Saturday afternoon I've eaten around four to five cups of food. BTW-food is ever increasingly just something that is there. Everything just tastes so-so. Nothing is appealing anymore; so I'm eating because I need to eat--occasionally because I'm actually hungry.
In case anybody is wondering about my smelling ammonia...yes, the odor is always present, and I will still have its taste in my mouth once in a while. It's now been around so long I rarely take conscious notice of it. It's always there, though. I have times where it will suddenly assault my senses and I will be very aware of it.
Let's see...I know there was one or two more things I wanted to say; but I can't remember what they were. So, that's all, I guess.
Good Health to All!
ScottW
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