Three more days without improvement.
Friday, Saturday and Sunday were pretty much the same as the previous days. About the only difference was that the edema was reduced by about 50%. I've noticed this pattern before wherein I have worsening symptomology, yet the edema inexplicably reduces. I would expect the opposite to be happening; but maybe this is just my body doing this. I have absolutely no idea if other advanced PCKD patients experience anything similar.
The headache has been terrible. I finally decided to start taking two T3's when my I need--rather than taking one, waiting to see if another is needed, then taking the second--and it has helped tremendously. I am able to have greater control of my headaches.
My nausea has been plain terrible. This morning I awoke with intense nausea and took a half dose of Promethazine before doing anything else. I laid back down, and eventually fell back asleep; but not before being completely miserable for around 45 minutes before it took effect. I then fell back asleep for another five hours; awaking with reduced nausea, but lots of grogginess...which was no surprise.
No other changes or surprises. All in all, things continue downhill as I need them to. I'll be going to do my lab work blood draws later this week in advance of next Tuesday's nephrology appointment.
Good Health to All!
ScottW
Monday, August 29, 2011
Friday, August 26, 2011
26 August 2011
It's only been five days since my last entry...but it sure seems longer.
There has been no break in the symptomology since then; only a slight, sustained increase in the nausea. In fact, I just took a second small dose of Promethazine after the first small dose did nothing to alleviate my nausea. If it puts me to sleep then so be it. I just know that I can't take much more of this nausea today.
My appetite continues to be way down. Over the last three days I've eaten a total of approx. 2.5 cups of food. Even my liquid intake is substantially less. I 'm taking in an average of less than half a gallon of liquids per day. Water is unappealing, as is milk, etc. I'm now drinking liquids only because my body needs them, or to take my meds.
My sleep pattern is about the same as last time...nightly sleep plus four hours or so in the afternoon. This continues to have zero effect on the overall fatigue and exhaustion that I feel every day. It is incredibly frustrating to awaken day after day with my batteries drained and my body dragging. I realized the other day that the only time I have any energy is when I dream, and my mind is free from my physical body. Never in my life have I even imagined that I would be in this position. While there isn't much I can do about the physical, I still control the mental side of this. That is the crucial fight; and is what I work at constantly day after day. I have to...I must if I am to emerge on the other side with positivity, strength, goals and hope.
That's all for today. (I'm actually finishing this up hours after I started it because of the nausea I had earlier.) My head is killing me, the nausea is just barely controlled, and I feel awful.
As always, I will hope for better days ahead.
Good Health to All!
ScottW
There has been no break in the symptomology since then; only a slight, sustained increase in the nausea. In fact, I just took a second small dose of Promethazine after the first small dose did nothing to alleviate my nausea. If it puts me to sleep then so be it. I just know that I can't take much more of this nausea today.
My appetite continues to be way down. Over the last three days I've eaten a total of approx. 2.5 cups of food. Even my liquid intake is substantially less. I 'm taking in an average of less than half a gallon of liquids per day. Water is unappealing, as is milk, etc. I'm now drinking liquids only because my body needs them, or to take my meds.
My sleep pattern is about the same as last time...nightly sleep plus four hours or so in the afternoon. This continues to have zero effect on the overall fatigue and exhaustion that I feel every day. It is incredibly frustrating to awaken day after day with my batteries drained and my body dragging. I realized the other day that the only time I have any energy is when I dream, and my mind is free from my physical body. Never in my life have I even imagined that I would be in this position. While there isn't much I can do about the physical, I still control the mental side of this. That is the crucial fight; and is what I work at constantly day after day. I have to...I must if I am to emerge on the other side with positivity, strength, goals and hope.
That's all for today. (I'm actually finishing this up hours after I started it because of the nausea I had earlier.) My head is killing me, the nausea is just barely controlled, and I feel awful.
As always, I will hope for better days ahead.
Good Health to All!
ScottW
Saturday, August 20, 2011
20 August 2011
(*Yay! I've gotten online, so let's make this quick!)
The last three days have been the same...bad.
My energy is way down. My eating has been OK...I just have no physical energy.
The headache is nearly out of my control. Though I'm still trying to limit my T3 usage to 4x/day, I may soon have to abandon that and increase it to the level noted on the Rx. As my wife tells me, "It's better to be comfortable rather than in pain."
That ill feeling I can't describe seems to be increasing. I'm positive this adds to the exhaustion I feel. I guess you might say that my body is finally telling me--quite loudly--that it is really sick. I thought that the symptomology up to now has been bad. I was wrong. Yes, what I've gone through up to this point has indeed been bad. Now, I feel like I'm going from bad to worse...with ever-increasing worse still to come.
With all of this happening, I find the mental fight now more vital than ever before. I consciously, deliberately place a positive thought in my mind as soon as I awaken. I think only of positive things. Holding off despair and discouragement has become absolutely imperative. So long as I do this, my mind will stay strong; warding off the negativity that would so easily destroy my ability to fight this disease and send me into depression. I promise you right now going to that dark place will never happen!
Anyhow, that's my entry today. Short, and to the point.
Good Health to all!
ScottW
The last three days have been the same...bad.
My energy is way down. My eating has been OK...I just have no physical energy.
The headache is nearly out of my control. Though I'm still trying to limit my T3 usage to 4x/day, I may soon have to abandon that and increase it to the level noted on the Rx. As my wife tells me, "It's better to be comfortable rather than in pain."
That ill feeling I can't describe seems to be increasing. I'm positive this adds to the exhaustion I feel. I guess you might say that my body is finally telling me--quite loudly--that it is really sick. I thought that the symptomology up to now has been bad. I was wrong. Yes, what I've gone through up to this point has indeed been bad. Now, I feel like I'm going from bad to worse...with ever-increasing worse still to come.
With all of this happening, I find the mental fight now more vital than ever before. I consciously, deliberately place a positive thought in my mind as soon as I awaken. I think only of positive things. Holding off despair and discouragement has become absolutely imperative. So long as I do this, my mind will stay strong; warding off the negativity that would so easily destroy my ability to fight this disease and send me into depression. I promise you right now going to that dark place will never happen!
Anyhow, that's my entry today. Short, and to the point.
Good Health to all!
ScottW
Wednesday, August 17, 2011
17 August 2011
It's been twelve days since my last update--quite a long time. I continue to have internet connection issues, plus, I've been feeling so lousy that I haven't even wanted to try and solve the internet thing. Let's get started before my connection issues arise again...
(I won't go into specific days, since that would require me to remember things that I've already forgotten. So, we'll just talk in overall terms for todays blog.)
Overall....Lousy. Yuck! Lots of nausea (and Promethazine) just about every day, all day. When I'm not nauseated I just don't feel well. I've been trying to describe it; but have failed to put it into words. 'I just don't feel well.' That's the only description I've come up with.
The vertigo has been almost constant. Even sitting in a chair has been no relief. I'm still mobile inspite of the vertigo; but it is awfully difficult to do anything. As before, using my cane outside the house has increasingly saved me from ground-level falls. Additionally, the vertigo adds to the nausea and ups that level as well. Woo-Hoo!
My headache has been terrible. Though I've actually had a few moments when I've realized the pain isn't too bad, this usually followed shortly with sudden increases in pain to the severe level. I've been using my TMD occlusive devices to continue minimizing any TMD involvement; but to absolutely no avail on the level and intensity of the headaches. On last count, my T3 usage has elevated to 4.16/day. Even at that level of use, I am tolerating a lot of headache pain--I just don't want to be using any more.
My breath, according to others, is increasingly smelling like urine. It's not an obvious odor...yet; but people are noticing. Those closest to me understand I can't do much about it beyond breath mints, so they never say anything that would make me feel bad...which I appreciate immensely.
The edema in my legs and arms is doing its up and down thing. No pattern to its increases. I suppose it's a good thing at this point that the edema isn't constant and severe as this would be a strong indication of organ failure.
I was looking in the mirror the other day and noticed for the first time (I think) that my face is looking thin, and my overall appearance finally reflects how sick I am. I told my wife about this and she agreed with my assessment.
As before, my vision gets better or worse, depending on how I'm feeling. I'm using my reading glasses a lot these days, but they're not always helping any more. I realize that my age dictates a certain decrease in vision; but it's the getting better and worse thing that is odd. I still personally believe that this is somehow tied in with the increasing symptomology of the PCKD.
My sleep is almost always restless these days. My dreams are almost uncontrollable now as my subconscious sorts everything. I do have dreams that are still 100% controlled; but these are becoming the exception instead of the norm. I awaken every day feeling as if I haven't gotten any sleep. Whether I've had six, four or even seven hours of sleep, I'm always exhausted now. Plus, over the last seven or eight days I've had a three+ hour nap every day. These have come on anywhere from a few hours after awaking, to several. There's no pattern to the naps; they just happen. And of course, I awaken from these also feeling as exhausted as when I went to sleep.
My food intake has been poor, to put it mildly. I've averaging about one cup of food per day. I actually had two days last week that I didn't eat anything. No snacks, either. I simply wasn't hungry. I know a part of these two days was because of how intensely unwell I was feeling.
My urine continues to be foamy, cloudy and odoriferous. The decrease in frequency and overall output remains. Additionally, I've noticed a number of times that the foaminess had a red tint to it, as if blood were in the urine, but not yet blatantly visible. I have still had no apparent evidence of kidney stones--thank goodness! There's no pain on urination; no blockages of the urinary flow, etc.
I think that's about all. Overall, I'm feeling increasingly worse as each week passes. I've got my next nephrology appointment coming up in early September.
I'll hopefully have my internet connection problems solved before long. Thanks for bearing with me through whatever is going on with that.
Good Health to All!
ScottW
(I won't go into specific days, since that would require me to remember things that I've already forgotten. So, we'll just talk in overall terms for todays blog.)
Overall....Lousy. Yuck! Lots of nausea (and Promethazine) just about every day, all day. When I'm not nauseated I just don't feel well. I've been trying to describe it; but have failed to put it into words. 'I just don't feel well.' That's the only description I've come up with.
The vertigo has been almost constant. Even sitting in a chair has been no relief. I'm still mobile inspite of the vertigo; but it is awfully difficult to do anything. As before, using my cane outside the house has increasingly saved me from ground-level falls. Additionally, the vertigo adds to the nausea and ups that level as well. Woo-Hoo!
My headache has been terrible. Though I've actually had a few moments when I've realized the pain isn't too bad, this usually followed shortly with sudden increases in pain to the severe level. I've been using my TMD occlusive devices to continue minimizing any TMD involvement; but to absolutely no avail on the level and intensity of the headaches. On last count, my T3 usage has elevated to 4.16/day. Even at that level of use, I am tolerating a lot of headache pain--I just don't want to be using any more.
My breath, according to others, is increasingly smelling like urine. It's not an obvious odor...yet; but people are noticing. Those closest to me understand I can't do much about it beyond breath mints, so they never say anything that would make me feel bad...which I appreciate immensely.
The edema in my legs and arms is doing its up and down thing. No pattern to its increases. I suppose it's a good thing at this point that the edema isn't constant and severe as this would be a strong indication of organ failure.
I was looking in the mirror the other day and noticed for the first time (I think) that my face is looking thin, and my overall appearance finally reflects how sick I am. I told my wife about this and she agreed with my assessment.
As before, my vision gets better or worse, depending on how I'm feeling. I'm using my reading glasses a lot these days, but they're not always helping any more. I realize that my age dictates a certain decrease in vision; but it's the getting better and worse thing that is odd. I still personally believe that this is somehow tied in with the increasing symptomology of the PCKD.
My sleep is almost always restless these days. My dreams are almost uncontrollable now as my subconscious sorts everything. I do have dreams that are still 100% controlled; but these are becoming the exception instead of the norm. I awaken every day feeling as if I haven't gotten any sleep. Whether I've had six, four or even seven hours of sleep, I'm always exhausted now. Plus, over the last seven or eight days I've had a three+ hour nap every day. These have come on anywhere from a few hours after awaking, to several. There's no pattern to the naps; they just happen. And of course, I awaken from these also feeling as exhausted as when I went to sleep.
My food intake has been poor, to put it mildly. I've averaging about one cup of food per day. I actually had two days last week that I didn't eat anything. No snacks, either. I simply wasn't hungry. I know a part of these two days was because of how intensely unwell I was feeling.
My urine continues to be foamy, cloudy and odoriferous. The decrease in frequency and overall output remains. Additionally, I've noticed a number of times that the foaminess had a red tint to it, as if blood were in the urine, but not yet blatantly visible. I have still had no apparent evidence of kidney stones--thank goodness! There's no pain on urination; no blockages of the urinary flow, etc.
I think that's about all. Overall, I'm feeling increasingly worse as each week passes. I've got my next nephrology appointment coming up in early September.
I'll hopefully have my internet connection problems solved before long. Thanks for bearing with me through whatever is going on with that.
Good Health to All!
ScottW
Friday, August 5, 2011
05 Aug. 2011
I know it's been a while since my last entry. This is partly due to having issues with internet access. The other part is because I've been feeling horrid most of this last while.
My worst day was this past Tuesday (02 Aug.). I awoke feeling extremely nauseated, and my head was raging. The first thing I did was take a half dose of Promethazine. This failed to alleviate the nausea, and I ended up taking a small dose (1/4) about an hour later, then another small dose about two hours after that. I never did feel better than mildly nauseated. In the mean time I had to address my headache; which was at a solid 10.
I started out with two T3's. This barely touched the pain. After three hours I couldn't take it anymore and took a third T3. This got the headache to back off to a manageable 9. For the remainder of the day I had at least two T3's in me at all times.
In addition to these two nasty things, I had zero energy. My whole body felt as if I had been awake for days. I couldn't eat; I barely drank anything--not that I wanted to have either anyway because of the nausea. Plus, my urine was very cloudy and strongly odoriferous.
To tell you I was miserable would be understating things by a vast margin. Eeew!
Sine Tuesday my headache has not diminished. I've even used my TMD occlusive devices just to eliminate TMD complications; which didn't help at all.
As to good news, my appetite is back a little. On Wednesday I ate all of about 3/4 cup of food; then about 1.5 cups on Thursday. Today was about the same as Thursday. So that is good news at least. Also, the nausea has retreated to its normal incidences. I have no idea why the sudden increase; I'm just glad it's over.
My fistula is getting stronger. I can now feel its pulsations along the length of my arm, and can accurately follow the vein to the crook of my elbow. On the annoying side, I can feel the pulsing in my palm, in my bicep, and can feel it anytime the fistula is resting against my torso, in my chest! It's so annoying. Further, if I have my left arm under my pillow at night, I can hear the Thrill of the pulsations through the pillow. It's really quite loud, actually! Oh well. C'est La Vie. I'd rather have it than not.
The other days not covered above have been a bit worse than my norm. I don't know what's going on. Just progression of the disease I suppose. I'll know in another month how things are going. Because I'm on one of those plateaus (before heading down again), my nephrologist is waiting two months between last visit and next. So, unless something dramatic happens, I won't be seeing him until early September.
That's all. My head is killing me...again. So I'll be on my way.
Good Health to All!
ScottW
My worst day was this past Tuesday (02 Aug.). I awoke feeling extremely nauseated, and my head was raging. The first thing I did was take a half dose of Promethazine. This failed to alleviate the nausea, and I ended up taking a small dose (1/4) about an hour later, then another small dose about two hours after that. I never did feel better than mildly nauseated. In the mean time I had to address my headache; which was at a solid 10.
I started out with two T3's. This barely touched the pain. After three hours I couldn't take it anymore and took a third T3. This got the headache to back off to a manageable 9. For the remainder of the day I had at least two T3's in me at all times.
In addition to these two nasty things, I had zero energy. My whole body felt as if I had been awake for days. I couldn't eat; I barely drank anything--not that I wanted to have either anyway because of the nausea. Plus, my urine was very cloudy and strongly odoriferous.
To tell you I was miserable would be understating things by a vast margin. Eeew!
Sine Tuesday my headache has not diminished. I've even used my TMD occlusive devices just to eliminate TMD complications; which didn't help at all.
As to good news, my appetite is back a little. On Wednesday I ate all of about 3/4 cup of food; then about 1.5 cups on Thursday. Today was about the same as Thursday. So that is good news at least. Also, the nausea has retreated to its normal incidences. I have no idea why the sudden increase; I'm just glad it's over.
My fistula is getting stronger. I can now feel its pulsations along the length of my arm, and can accurately follow the vein to the crook of my elbow. On the annoying side, I can feel the pulsing in my palm, in my bicep, and can feel it anytime the fistula is resting against my torso, in my chest! It's so annoying. Further, if I have my left arm under my pillow at night, I can hear the Thrill of the pulsations through the pillow. It's really quite loud, actually! Oh well. C'est La Vie. I'd rather have it than not.
The other days not covered above have been a bit worse than my norm. I don't know what's going on. Just progression of the disease I suppose. I'll know in another month how things are going. Because I'm on one of those plateaus (before heading down again), my nephrologist is waiting two months between last visit and next. So, unless something dramatic happens, I won't be seeing him until early September.
That's all. My head is killing me...again. So I'll be on my way.
Good Health to All!
ScottW
Subscribe to:
Posts (Atom)
