An eventful few days since my last entry.
To start, the day of my last entry I had noted that my headache was decreased somewhat. Well, later that day it came roaring back with a solid performance in the range of 9-9.5. Since then, it has been up and down. Along with that movement has been a like movement of T3 usage--so no daily average...at least over the last five days.
My nausea has also taking a tick upward. I was again awoken from my sleep with intense nausea. I took a full dose of Promethazine. It took away the nausea, made me sleep a solid nine hours, then left me feeling groggy and sleepy all day (I took a three hour nap after being awake for just three hours--so twelve hours of sleep over a fifteen hour period).
The cramping I had in my legs last week continues. My left leg seems to have more cramping going on than in the right, but both are really sore from the constant muscle seizing. Stretching does nothing but exacerbate the problem, so I am just trying to keep my legs warm to try and reduce the cramping. So far, my efforts have resulted in minimal positive effects. The affected areas of both legs include the feet (toes too!), ankles, calves shins and upper tib/fib region.
The flank pain continues to be a problem with constant pain. About the only good news on this front is that I am not having any sudden flareups of intense pain.
And that's all I can think of. I'm forgetting something important that I wanted to mention. If I remember, I'll place it at the bottom of this entry.
Good Health to All!
ScottW
Tuesday, January 10, 2012
Thursday, January 5, 2012
05 January 2012
Welcome to 2012!
Just like my last entry [post Christmas], it's been too long since I last wrote; so let's get going...
Increased and sustained nausea has been an issue. I am still getting sick every time I eat; but what has increased is the incidences of nausea hitting me out of nowhere. I have continued to take at least a small dose of Promethazine every day. I have also been taking other small doses daily as the nausea dictates. Luckily I am keeping it under control, so emesis is not a strong possibility. However, the increased usage of the anti-emetic has left me groggier and more blah than usual (which has been part of why this entry has taken so long to start).
My sleep continues to literally be all over the place. I haven gotten any consistent sleep hours in weeks, and my daily naps have also been varying in number, length and quality. On average, I've been getting total sleep of about 11.5-13 hours of sleep per day...and still feeling exhausted when I am awake.
My dreams continue to revolve around control. Most times I end up having no control of my dreams. The difference now is that I no longer fear the loss of control over my subconscious like I did only recently. I have come to accept that my mind is only trying to sort everything out; and the stress of so many unknowns on my subconscious mind will take its toll. I have only to weather that process, and keep myself on as even a keel as possible. I still work every day to keep my mind in a good place, but this personal observation has made that task a little easier.
The bilateral flank pain has been up and down. When it flares up, it stays for days without relief. When it is reduced, I enjoy the break...like I am today.
The headache and its ever-present and very intense pain continues on uninterrupted. Let's see...it's now at 25.5 months in duration, and counting. The only good news on this front is that it has actually reduced its average pain level to a wholly refreshing 7.5-8.0 with intermittent (and unpredictable) flareups. I'll definitely take the "break."
The period of my daily diarrhea episodes seems to be over. I don't recall when it started, but it ended a couple of days ago. I am very glad for this improvement.
Edema has been up and down. It is never gone from either my hands or my feet these days; it just varies as to how much water is being retained in the tissues. I did observe something interesting last weekend. On Sunday I was ridiculously thirsty all day. No matter how much I drank, I was still wanting more. Of course, the more I drank, the greater the edema became. Still, I would have expected the opposite to occur--you know, increased edema and no craving for liquids; or, decreased edema and increased craving for liquids--but this was not the case. Then, my urinary output was no greater than usual. Interesting.
And speaking of urinary output, this too has been fairly consistent in volume, color and other characteristics. There still is no overt evidence of blood in my urine, nor have I had any indication of kidney stone development.
Vertigo remains a daily issue. I now haven't driven a car in over a year because of its prevalence. No sense in risking an accident due to sudden spinning or general dizziness. My use of a cane when outside the home still saves me from ground level falls with increasing frequency. Inside the home, I am grabbing doors, counters and walls to steady myself more and more. My family has noticed this, too. I still am not sure if the vertigo is the result of the disease, the meds, or a combination of both. I am only trying to deal with it as best I can. The worst part of the vertigo is when I have it in my dreams--a thing which has happened numerous times the last few weeks. I awaken to a spinning room, and with intense nausea. It is not a fun thing to awaken to.
That's all I can think of today. My next entry will not be so many days later.
Good Health to You All in 2012!
ScottW
Just like my last entry [post Christmas], it's been too long since I last wrote; so let's get going...
Increased and sustained nausea has been an issue. I am still getting sick every time I eat; but what has increased is the incidences of nausea hitting me out of nowhere. I have continued to take at least a small dose of Promethazine every day. I have also been taking other small doses daily as the nausea dictates. Luckily I am keeping it under control, so emesis is not a strong possibility. However, the increased usage of the anti-emetic has left me groggier and more blah than usual (which has been part of why this entry has taken so long to start).
My sleep continues to literally be all over the place. I haven gotten any consistent sleep hours in weeks, and my daily naps have also been varying in number, length and quality. On average, I've been getting total sleep of about 11.5-13 hours of sleep per day...and still feeling exhausted when I am awake.
My dreams continue to revolve around control. Most times I end up having no control of my dreams. The difference now is that I no longer fear the loss of control over my subconscious like I did only recently. I have come to accept that my mind is only trying to sort everything out; and the stress of so many unknowns on my subconscious mind will take its toll. I have only to weather that process, and keep myself on as even a keel as possible. I still work every day to keep my mind in a good place, but this personal observation has made that task a little easier.
The bilateral flank pain has been up and down. When it flares up, it stays for days without relief. When it is reduced, I enjoy the break...like I am today.
The headache and its ever-present and very intense pain continues on uninterrupted. Let's see...it's now at 25.5 months in duration, and counting. The only good news on this front is that it has actually reduced its average pain level to a wholly refreshing 7.5-8.0 with intermittent (and unpredictable) flareups. I'll definitely take the "break."
The period of my daily diarrhea episodes seems to be over. I don't recall when it started, but it ended a couple of days ago. I am very glad for this improvement.
Edema has been up and down. It is never gone from either my hands or my feet these days; it just varies as to how much water is being retained in the tissues. I did observe something interesting last weekend. On Sunday I was ridiculously thirsty all day. No matter how much I drank, I was still wanting more. Of course, the more I drank, the greater the edema became. Still, I would have expected the opposite to occur--you know, increased edema and no craving for liquids; or, decreased edema and increased craving for liquids--but this was not the case. Then, my urinary output was no greater than usual. Interesting.
And speaking of urinary output, this too has been fairly consistent in volume, color and other characteristics. There still is no overt evidence of blood in my urine, nor have I had any indication of kidney stone development.
Vertigo remains a daily issue. I now haven't driven a car in over a year because of its prevalence. No sense in risking an accident due to sudden spinning or general dizziness. My use of a cane when outside the home still saves me from ground level falls with increasing frequency. Inside the home, I am grabbing doors, counters and walls to steady myself more and more. My family has noticed this, too. I still am not sure if the vertigo is the result of the disease, the meds, or a combination of both. I am only trying to deal with it as best I can. The worst part of the vertigo is when I have it in my dreams--a thing which has happened numerous times the last few weeks. I awaken to a spinning room, and with intense nausea. It is not a fun thing to awaken to.
That's all I can think of today. My next entry will not be so many days later.
Good Health to You All in 2012!
ScottW
Tuesday, December 27, 2011
27 December 2011
I know it's been a lot of days since my last entry, but with Christmas coming and going--and all the busyness involved with the holiday--taking the time to write on here has slipped away rather speedily. So, let's get started...
I got over the disappointment I had over the lack of progress [towards dialysis] within a day or two. I just had to process the information, and get myself a little busier to get it off my mind. So, it's all good now.
My Christmas was awesome! I enjoyed getting prepared, prepping and eating food and playing with my grandkids. Unlike Thanksgiving, I didn't feel lousy when I ate and actually enjoyed the culinary delights!
Things health-wise have been not so good. To begin with, I've had to take promethazine nearly every day since my last blog; sometimes more than one partial dose in a day. Plus, most times I eat I've gotten nauseated after just a few bites and need to stop. I've actually pushed myself to eat just to get food in my body, then wait for the nausea to pass.
My sleep has been poor, at best. A lot of my dreams have revolved around my losing control and being at the whim of others. Additionally, the sleep itself has been extremely restless; both things that leave me utterly exhausted mentally and physically. I spend many days in a bit of a fog, and fall asleep within seconds. In fact, I had started this blog earlier today, got sleepy really fast, then slept for 3.5 hours.
As of today I have had at least one episode of diarrhea for thirteen straight days. I don't know why because, aside from Christmas day, my diet and total intake has not changed from what I've been doing these many months. One or two doses of Imodium have taken care of the issue.
My fluid intake has remained consistent--not much variation either way. Edema has been only a minor problem; and has been slightly moderate every day. No big edemic increases, no big urinary drains...just nice and steady. Speaking of urine, this too has been consistent in flow, volume and characteristics.
Because of the sleep issues my energy level has been awful. I get a few minutes work done then have to sit down. Then, I get less work done and sit for longer, etc, until I can't physically do any more. The lack of overally work I get completed is less than normal.
The bilateral flank pain has been up and down in intensity. No consistency on this one way or the other.
The headache has been terrible nearly every day. On average, it has been hitting a solid 9.5, and is only just under control. Many days I have taken a T3 only to have to take another just to break through the pain. I have used the TMD devices just to address the possibility of TMD involvement. However, nothing eliminates the headache; and the meds only barely reduce the pain level.
I've been having what has seemed to be increased vertigo and general dizziness. For instance, I was watching TV yesterday, glanced away, and found the room spinning and wobbling. Eyes open or shut, the vertigo wouldn't go away for about five minutes. Plus, I've lost my balance numerous times when out and about with Christmas shopping. Luckily, my cane kept me vertical. This increase of vertigo and dizziness has been going on both inside the house and outside.
That's all I can think of. I know I'm missing a few things I wanted to mention...I just can't remember right now.
With the New Year holiday later this week I may again have a lag in my next entry. So anticipating that, I hope that you, my readers, have a fun, safe and memorable New Years celebration. May 2012 be a year that finds each of you healthy, happy and content.
HAPPY NEW YEAR!
ScottW
I got over the disappointment I had over the lack of progress [towards dialysis] within a day or two. I just had to process the information, and get myself a little busier to get it off my mind. So, it's all good now.
My Christmas was awesome! I enjoyed getting prepared, prepping and eating food and playing with my grandkids. Unlike Thanksgiving, I didn't feel lousy when I ate and actually enjoyed the culinary delights!
Things health-wise have been not so good. To begin with, I've had to take promethazine nearly every day since my last blog; sometimes more than one partial dose in a day. Plus, most times I eat I've gotten nauseated after just a few bites and need to stop. I've actually pushed myself to eat just to get food in my body, then wait for the nausea to pass.
My sleep has been poor, at best. A lot of my dreams have revolved around my losing control and being at the whim of others. Additionally, the sleep itself has been extremely restless; both things that leave me utterly exhausted mentally and physically. I spend many days in a bit of a fog, and fall asleep within seconds. In fact, I had started this blog earlier today, got sleepy really fast, then slept for 3.5 hours.
As of today I have had at least one episode of diarrhea for thirteen straight days. I don't know why because, aside from Christmas day, my diet and total intake has not changed from what I've been doing these many months. One or two doses of Imodium have taken care of the issue.
My fluid intake has remained consistent--not much variation either way. Edema has been only a minor problem; and has been slightly moderate every day. No big edemic increases, no big urinary drains...just nice and steady. Speaking of urine, this too has been consistent in flow, volume and characteristics.
Because of the sleep issues my energy level has been awful. I get a few minutes work done then have to sit down. Then, I get less work done and sit for longer, etc, until I can't physically do any more. The lack of overally work I get completed is less than normal.
The bilateral flank pain has been up and down in intensity. No consistency on this one way or the other.
The headache has been terrible nearly every day. On average, it has been hitting a solid 9.5, and is only just under control. Many days I have taken a T3 only to have to take another just to break through the pain. I have used the TMD devices just to address the possibility of TMD involvement. However, nothing eliminates the headache; and the meds only barely reduce the pain level.
I've been having what has seemed to be increased vertigo and general dizziness. For instance, I was watching TV yesterday, glanced away, and found the room spinning and wobbling. Eyes open or shut, the vertigo wouldn't go away for about five minutes. Plus, I've lost my balance numerous times when out and about with Christmas shopping. Luckily, my cane kept me vertical. This increase of vertigo and dizziness has been going on both inside the house and outside.
That's all I can think of. I know I'm missing a few things I wanted to mention...I just can't remember right now.
With the New Year holiday later this week I may again have a lag in my next entry. So anticipating that, I hope that you, my readers, have a fun, safe and memorable New Years celebration. May 2012 be a year that finds each of you healthy, happy and content.
HAPPY NEW YEAR!
ScottW
Friday, December 16, 2011
16 December 2011
The results of my labs are in, and they tell us that over the last six weeks, I am virtually unchanged. (yipee...)
My kidney function went up .60%, and all of my lab results are just about identical to my previous numbers. Even my weight was the same at 239 pounds.
All of which makes this post extremely easy.
I must admit that I am disappointed that nothing changed. The only hopeful thing I see in these numbers is the pattern of steady, steady, steady, rise, and then drop in my GFR.
If that pattern holds up, then in february I should show a drop of 1.5-2.5%. We'll see.
That's the news for now.
Good health to All!
ScottW
My kidney function went up .60%, and all of my lab results are just about identical to my previous numbers. Even my weight was the same at 239 pounds.
All of which makes this post extremely easy.
I must admit that I am disappointed that nothing changed. The only hopeful thing I see in these numbers is the pattern of steady, steady, steady, rise, and then drop in my GFR.
If that pattern holds up, then in february I should show a drop of 1.5-2.5%. We'll see.
That's the news for now.
Good health to All!
ScottW
Monday, December 12, 2011
12 December 2011
A tough weekend.
While my Upper Respiritory Infection (URI) continues to improve, the S/S's (Signs and Symptoms) of the PCKD have been kicking my butt.
My headache has been terrible, continuing to average a nasty 9.5. I've been using my TMD Occlusive devices just to be sure no TMD comp[lications carry over from day to day. However, the intense, painful headache remains.
Nausea has been a bigger issue the last few days as well. I've had to take regular doses of the anti-emetic Promethazine since Friday evening. Luckily, the med has kept the nausea under control.
Flank pain has been an issue this weekend. Nothing terrible, mind you; but it has definitely increased with a higher level of constant pain, and increases in incidences of the sudden, sharp pains on the R side. I've had to do a lot of adjusting my sitting and laying positions in order to reduce the pain.
My overall ill feeling has been bad, too. I've sat around a lot the past couple of days just feeling so yucky. No fun. And I still haven't found anything that alleviates that feeling.
The amount of food I eat has taken a hit this weekend as well. I ate OK on Saturday evening, but my Friday and Sunday intakes were really bad at about .75/cup each day. Everytime I do eat I either get nauseated, of have a wave of just not feeling well wash over me, forcing me to stop eating.
On the positive side of things my sleep has been of fairly good quality--at least my nighttime sleep. Naps are still coming on unpredictably and vary in quality, but my nightly sleep has improved.
Also, urinary output remains consistent, as does its color and characteristics. Foaminess is still high, too.
Finally, I'm doing a blood draw today for this Wednesday's nephrology appointment.
Good Health to All!
ScottW
**1030p--My labs drawn tonight were for CBC, Renal panel, Parathyroid and Testosterone. Plus, I had a UA (Urinalysis) as well. I will include the results when I write about Wednesday's appointment.
While my Upper Respiritory Infection (URI) continues to improve, the S/S's (Signs and Symptoms) of the PCKD have been kicking my butt.
My headache has been terrible, continuing to average a nasty 9.5. I've been using my TMD Occlusive devices just to be sure no TMD comp[lications carry over from day to day. However, the intense, painful headache remains.
Nausea has been a bigger issue the last few days as well. I've had to take regular doses of the anti-emetic Promethazine since Friday evening. Luckily, the med has kept the nausea under control.
Flank pain has been an issue this weekend. Nothing terrible, mind you; but it has definitely increased with a higher level of constant pain, and increases in incidences of the sudden, sharp pains on the R side. I've had to do a lot of adjusting my sitting and laying positions in order to reduce the pain.
My overall ill feeling has been bad, too. I've sat around a lot the past couple of days just feeling so yucky. No fun. And I still haven't found anything that alleviates that feeling.
The amount of food I eat has taken a hit this weekend as well. I ate OK on Saturday evening, but my Friday and Sunday intakes were really bad at about .75/cup each day. Everytime I do eat I either get nauseated, of have a wave of just not feeling well wash over me, forcing me to stop eating.
On the positive side of things my sleep has been of fairly good quality--at least my nighttime sleep. Naps are still coming on unpredictably and vary in quality, but my nightly sleep has improved.
Also, urinary output remains consistent, as does its color and characteristics. Foaminess is still high, too.
Finally, I'm doing a blood draw today for this Wednesday's nephrology appointment.
Good Health to All!
ScottW
**1030p--My labs drawn tonight were for CBC, Renal panel, Parathyroid and Testosterone. Plus, I had a UA (Urinalysis) as well. I will include the results when I write about Wednesday's appointment.
Friday, December 9, 2011
09 December 2011
What a week!...and I don't mean that in a good way.
Last weekend was OK, but I started getting a scratchy throat on Sunday. By Monday morning I had an upper respiritory infection. The only good news in this is that the URI never fully exploded into what it certainly could have. (Thank goodness for that!) However, the URI was no picnic. Lots of coughing, sinus swelling and phlegm development. The sinus pressure made my already severe headache just horrid. The headache pain literally averaged a 10.5+ all week.
Additionally, the ill feeling has been far worse than normal. Combined with the URI, I have felt mind-bogglingly awful since Monday. Promethazine didn't help at all, and T3's only reduced the headache down to a 10--and that was with two T3's in me!
Because of how i was feeling, I was taking more naps than normal. On average, I took naps each day totaling at least five hours per day. The most naps I took in a day was just yesterday. I'd slept poorly on Wednesday night, awaking at 415a Thursday morning. I was awake for just three hours then slept for two; then awake for 1.5 and slept for three; then awake for two hours and slept for another 2.5; awake for about five hours, then slept of and on for another three, and finally falling asleep for the night at 3a, and slept until ten this morning. The good news is that i awoke feeling a bit better than I have all week...I think the URI is on the mend!
About the only good news this week is that I didn't have to deal with severe edema on top of everything else. Don't ask me why the edema was down this week; I'm just grateful it was because it likely kept me from having a worse week than was already occurring.
Anyhow, that's all for today. A terrible week is gone, and one I don't wish to repeat anytime soon.
Good Health to All!
ScottW
Last weekend was OK, but I started getting a scratchy throat on Sunday. By Monday morning I had an upper respiritory infection. The only good news in this is that the URI never fully exploded into what it certainly could have. (Thank goodness for that!) However, the URI was no picnic. Lots of coughing, sinus swelling and phlegm development. The sinus pressure made my already severe headache just horrid. The headache pain literally averaged a 10.5+ all week.
Additionally, the ill feeling has been far worse than normal. Combined with the URI, I have felt mind-bogglingly awful since Monday. Promethazine didn't help at all, and T3's only reduced the headache down to a 10--and that was with two T3's in me!
Because of how i was feeling, I was taking more naps than normal. On average, I took naps each day totaling at least five hours per day. The most naps I took in a day was just yesterday. I'd slept poorly on Wednesday night, awaking at 415a Thursday morning. I was awake for just three hours then slept for two; then awake for 1.5 and slept for three; then awake for two hours and slept for another 2.5; awake for about five hours, then slept of and on for another three, and finally falling asleep for the night at 3a, and slept until ten this morning. The good news is that i awoke feeling a bit better than I have all week...I think the URI is on the mend!
About the only good news this week is that I didn't have to deal with severe edema on top of everything else. Don't ask me why the edema was down this week; I'm just grateful it was because it likely kept me from having a worse week than was already occurring.
Anyhow, that's all for today. A terrible week is gone, and one I don't wish to repeat anytime soon.
Good Health to All!
ScottW
Saturday, December 3, 2011
03 December 2011
I don't know about anyone else, but time is flying by and before I know it, too many days have passed and therefore, too much catching up has to be done. On that note, let's get started...
That ill feeling inside has become pretty bad. It's bringing down my ability to stay strong all the time. When it's really bad, I just lay down and feel fairly miserable. Nothing helps it. I just have to get through it.
The edema has continued to go through its now normal cycle of swelling in the afternoon and evening, and then reducing (via kidney filtration) by morning, then start all over again. At least I know my kidneys are still working a little bit.
The twenty four plus month-long headache continues to be an issue. Since my last entry, I have had zero TMD complications, yet my headache has been averaging a solid 8.5. Still no explanation for the existence of the headache aside from the prevalence of headaches amongst end-stage PKD patients that is of unknown etiology (unknown cause or origin).
The flank pain over my kidneys has been consistent in its nature. No sustained flare-ups, mostly it's just a constant pain. I've had instances of what I refer to as 'positional flare-ups' wherein I am sitting or laying in whatever position and the flank pain increases either slowly or suddenly. Only by changing position is the increased pain alleviated. These flare-ups happen four or five times per day, on average.
My appetite remains terrible. Besides having the nausea, the ill feeling also eliminates my desire to eat. Just yesterday I was feeling particularly bad [with that feeling] and didn't have anything to eat until 830p. Even then I only ate because I needed to. Speaking of nausea, that aspect has been reduced this week. That ill feeling however, has been constant and intense all week.
I've been struggling this week with my positivity. Lots of feeling bad has left my with having a tough time. Once I realized this, I was able to get my head back in place and look at things with a more positive outlook. Right now, I'm doing really well.
That's all I can think of today. I'll keep plugging away, and doing my best every day.
Good Health to All!
ScottW
That ill feeling inside has become pretty bad. It's bringing down my ability to stay strong all the time. When it's really bad, I just lay down and feel fairly miserable. Nothing helps it. I just have to get through it.
The edema has continued to go through its now normal cycle of swelling in the afternoon and evening, and then reducing (via kidney filtration) by morning, then start all over again. At least I know my kidneys are still working a little bit.
The twenty four plus month-long headache continues to be an issue. Since my last entry, I have had zero TMD complications, yet my headache has been averaging a solid 8.5. Still no explanation for the existence of the headache aside from the prevalence of headaches amongst end-stage PKD patients that is of unknown etiology (unknown cause or origin).
The flank pain over my kidneys has been consistent in its nature. No sustained flare-ups, mostly it's just a constant pain. I've had instances of what I refer to as 'positional flare-ups' wherein I am sitting or laying in whatever position and the flank pain increases either slowly or suddenly. Only by changing position is the increased pain alleviated. These flare-ups happen four or five times per day, on average.
My appetite remains terrible. Besides having the nausea, the ill feeling also eliminates my desire to eat. Just yesterday I was feeling particularly bad [with that feeling] and didn't have anything to eat until 830p. Even then I only ate because I needed to. Speaking of nausea, that aspect has been reduced this week. That ill feeling however, has been constant and intense all week.
I've been struggling this week with my positivity. Lots of feeling bad has left my with having a tough time. Once I realized this, I was able to get my head back in place and look at things with a more positive outlook. Right now, I'm doing really well.
That's all I can think of today. I'll keep plugging away, and doing my best every day.
Good Health to All!
ScottW
Subscribe to:
Posts (Atom)
