More.
That completely sums up the last six days. More edema, more exhaustion, more nausea, more mid-back pain...more.
Sleep has been terrible; to put it mildly. The last five or so days I sleep an average of about five hours; yet only get about three quality hours of rest. The other two hours are filled with restlessness and discomfort. Then yesterday was a doozie. I fell asleep Christmas night at about 9p, and slept until about 4a (again, restlessly). After waking (or I was awoken because of it), I became intensely nauseated and my head was killing me.
I first downed a T3 for my head, then once that had taken the headache down from a 9.5 to a 9, I addressed the nausea. I tried two Tums first, then had to turn to the Promethazine. Within 20 minutes the nausea was gone, and I began feeling sleepy--a side effect of the anti-emetic. By 6a I was asleep, and stayed there until 9a. Once awake, I groggily got through another hour before sleeping again for another three hours. After that, I was still extremely groggy and managed to stay awake for about two hours before again drifting off for almost an two more hours. This pattern repeated itself until I finally went to bed at 8p. Once there, I restlessly slept until 5a today. (Ick!) As of now, I'm not currently sleepy--I think the Promethazine finally wore off. Nothing like evidence of poor kidney filtration. I took just a half dose of the anti-emetic, and its effects lasted twenty four hours.
The edema continues to be quite evident. Both my hands and legs look about the same as last week. I weighed myself last week and I had gained six pounds (256 ttl). I'm not eating any more than is now normal; but with the increased edema so evident, I have no doubt that the weight gain is only water retention.
The headache is ever present and always painful. T3's are barely keeping it in check.
The mid-back pain that began to be evidenced last week continues. I am uncomfortable when laying or sitting. A pillow behind my back helps, but certainly doesn't alleviate the pain and discomfort. Still no additional S/S's related to this increase. I'm still watching for them though.
Since the onset of increased back pain, the ammonia smell has intensified. Plus, I'm not just smelling ammonia right now. Even after brushing my teeth I am noticing a nasty smell when I burp or breathe out quickly. I don't know how else to describe it. This is definitely new. Plus the fact that brushing or even mints don't lessen the odor. So far no one else can smell it...yet.
Appetite fatigue has begun to be an issue. Less and less foods are appealing. I hate not being able to choose what to eat from a cabinet full of food. More and more I am looking in the cabinets or refrigerator and just staring into either, and turning away more often than not. Even my snack foods aren't looking so good these days. But, I will still eat in spite of nothing looking appealing. Food is food; even if it's not appetizing.
That's about all I remember wanting to pass on to you today.
I hope everyone's Christmas was wonderful and fun!
Good Health to All!
ScottW
Monday, December 27, 2010
Thursday, December 23, 2010
Be Financially Prepared for a Transplant
I received the following article from The Transplant Experience, a newsletter sent out by Astellas Pharmaceuticals:
"Make Sure You Are Financially Prepared For The Transplant Jouney Ahead"
While you're waiting for your transplant, it's a good idea to find out exactly what benefits your healthcare plan will provide to help pay the costs of your transplant surgery, follow-up care, and medications. There are many types of healthcare plans that offer different levels of coverage. Staying informed can help you maximize the benefits you receive and also prevent unexpected surprises when you visit the doctor's office, hospital, or pharmacy.
Start by talking to your transplant financial coordinator or social worker—they can guide you on how to get the most from your plan. Some pharmaceutical companies, including Astellas, can also offer assistance on understanding benefits available under your plan. If you are pre-transplant, your doctor may intend for you to take Prograf® (tacrolimus capsules) once you receive your new organ. In this case, you may take advantage of Astellas Reimbursement ServicesSM (ARS), which delivers high-quality support services at no cost to you. ARS can research your coverage and tell you what your out-of-pocket costs should be—before you go to the pharmacy for the first time.
To get help understanding your future coverage, call ARS at 1-800-477-6472, Monday through Friday, between the hours of 9 am and 8 pm EST.
Steps to ARS benefit verification
1. Contact ARS to request assistance with a benefit verification or to complete a Benefit Verification Request Form, which you can download here. If you have any questions while completing the form, please contact ARS at 1-800-477-6472 or complete the form with your healthcare provider or case manager. Once the form is completed, fax it and a copy of the front and back of your insurance card(s) to ARS at 1-866-317-6235.
2. Within one day, your insurance provider will be contacted by ARS to verify your benefit coverage and any claims submission requirements.
3. Once this information has been verified, you or your healthcare provider will receive a Summary of Benefits by mail or fax.
4. ARS is available to answer any questions you or your healthcare provider may have.
*Based on analysis of patients covered by commercial plans who receive Prograf prescriptions.
To better prepare for the cost of transplant surgery, here are some important questions you should ask your financial coordinator:
•Does my plan cover expenses such as travel, food, and lodging while I am at the transplant center? Will it cover these expenses for my family?
•If my plan covers travel, food, and lodging costs, how much will it pay? Will it cover the cost of a person to come with me?
•Do the costs vary if I have a living donor?
•What financial coverage does the hospital accept (Medicare, Medicaid, private insurance, etc)?
**For additional questions, visit the financial support section of www.TransplantExperience.com.
##I am NOT endorsing any particular products, companies or services, etc. My intent is to merely provide information for others as is sent to my email. If you have any questions about any company you read about in these newsletter copies, please contact that company directly as I am in no way affiliated with them, aside from receiving information regarding kidney transplant and its anticipated experiences and needs. Additionally, I do NOT receive any compensation for passing this information to my readers. Thank You.
ScottW
"Make Sure You Are Financially Prepared For The Transplant Jouney Ahead"
While you're waiting for your transplant, it's a good idea to find out exactly what benefits your healthcare plan will provide to help pay the costs of your transplant surgery, follow-up care, and medications. There are many types of healthcare plans that offer different levels of coverage. Staying informed can help you maximize the benefits you receive and also prevent unexpected surprises when you visit the doctor's office, hospital, or pharmacy.
Start by talking to your transplant financial coordinator or social worker—they can guide you on how to get the most from your plan. Some pharmaceutical companies, including Astellas, can also offer assistance on understanding benefits available under your plan. If you are pre-transplant, your doctor may intend for you to take Prograf® (tacrolimus capsules) once you receive your new organ. In this case, you may take advantage of Astellas Reimbursement ServicesSM (ARS), which delivers high-quality support services at no cost to you. ARS can research your coverage and tell you what your out-of-pocket costs should be—before you go to the pharmacy for the first time.
To get help understanding your future coverage, call ARS at 1-800-477-6472, Monday through Friday, between the hours of 9 am and 8 pm EST.
Steps to ARS benefit verification
1. Contact ARS to request assistance with a benefit verification or to complete a Benefit Verification Request Form, which you can download here. If you have any questions while completing the form, please contact ARS at 1-800-477-6472 or complete the form with your healthcare provider or case manager. Once the form is completed, fax it and a copy of the front and back of your insurance card(s) to ARS at 1-866-317-6235.
2. Within one day, your insurance provider will be contacted by ARS to verify your benefit coverage and any claims submission requirements.
3. Once this information has been verified, you or your healthcare provider will receive a Summary of Benefits by mail or fax.
4. ARS is available to answer any questions you or your healthcare provider may have.
*Based on analysis of patients covered by commercial plans who receive Prograf prescriptions.
To better prepare for the cost of transplant surgery, here are some important questions you should ask your financial coordinator:
•Does my plan cover expenses such as travel, food, and lodging while I am at the transplant center? Will it cover these expenses for my family?
•If my plan covers travel, food, and lodging costs, how much will it pay? Will it cover the cost of a person to come with me?
•Do the costs vary if I have a living donor?
•What financial coverage does the hospital accept (Medicare, Medicaid, private insurance, etc)?
**For additional questions, visit the financial support section of www.TransplantExperience.com.
##I am NOT endorsing any particular products, companies or services, etc. My intent is to merely provide information for others as is sent to my email. If you have any questions about any company you read about in these newsletter copies, please contact that company directly as I am in no way affiliated with them, aside from receiving information regarding kidney transplant and its anticipated experiences and needs. Additionally, I do NOT receive any compensation for passing this information to my readers. Thank You.
ScottW
Monday, December 20, 2010
20 Dec. 2010
It's been five days already? It only seems like two or three since my last entry.
Well, I've had a change. As I have been indicating, I've been feeling extreme exhaustion no matter how much sleep, or how many naps I get. The change is that I am now sleeping/napping even more...well, sort of.
Over the last week or so, I've been paying attention to how much total sleep I get per day. On average I am sleeping (laying down) about 6-7 hours per day. (The quality of the rest is another matter entirely.) However, the total time spent napping has increased from approx. 2-3 hours/day to between 3-5 hours per day. The naps don't happen with any regularity or pattern--they just happen. I suddenly feel sleepy, and usually withing 5 minutes or so I am asleep (most often in a sitting or reclining position). Then, after I've slept for whatever time period, I am having increasing difficulty waking from the naps; often waking for only a few minutes before sleeping once again.
In spite of all of the sleep, I am finding that my exhaustion not only continues, but seems to be increasing as well. So, I go about my days feeling as if I'll fall asleep at any time...which again, is happening with greater frequency.
My headache remains at its elevated level 24/7. There is no longer even a slight break from its relentless pain.
The ammonia I smell (and often taste) has been bad again. I'm often waving my hand in front of my face in a vain attempt to get it away from my nose. At least I can feel like I'm able to do something about it; even though it is, in actuality, completely useless.
Over the last couple of days the kidney area on my back has been increasingly painful. Today it is the worst. I cannot sit back against anything firm (let along hard) for more than a minute before I'm very uncomfortable and squirming around. In fact, as I write this entry, I am sitting forward on the chair, leaning on my left elbow--just trying to be a bit more comfortable...but it's not really working. Oh well--it's still better than resting against the chair back.
The edema in my legs and hands is quite visible today. My fingers are looking like sausage links today, and my ankles are almost gone. Both my hands and feet have been itching a lot lately, so I really shouldn't be surprised. Right now the edemic tests are:
-Lower Arms-- Color +2, Rebound +5
-Hands/Fingers-- Color +2, Rebound +5
-Knees-- Color +2, Rebound +5
-Shins-- Color +3, Rebound >> +15
Ankles-- Color +3.5, Rebound >> +20
Feet (at the metatarsals-- Color +3, Rebound >>+25
*>> = Greater than.
So...yeah. Lots of edema today.
Lastly, I wanted to pass on that my taking my daily meds has been causing me increased discomfort over what has been previously going on. I usually take the Zantac 10-15 minutes ahead of the rest of my meds to help my stomach settle down prior to assaulting it with all the meds I have to ingest. Doing this has led to a marked decrease in the incidents of nausea precipitated by ingestion of meds. Over the last three days, I have become intensely nauseated in spite of the Zantac.
Between the time I awaken and the time I take the meds my stomach is usually doing...alright (relatively speaking). After I take my meds, the nausea increases, but not intensely. These past few days, once I ingest the meds, nausea hits me like those overwhelming onsets that come out of the blue; and nothing alleviates its. I really don't want to take the Promethazine (anti-emetic) because of this; but if it keeps up, I'll have to do just that. Eeeww.
That's it for today, I think. But, like always, I can't remember for sure.
I may or may not get another entry done before Christmas. We'll see.
Good Health to All!
ScottW
Well, I've had a change. As I have been indicating, I've been feeling extreme exhaustion no matter how much sleep, or how many naps I get. The change is that I am now sleeping/napping even more...well, sort of.
Over the last week or so, I've been paying attention to how much total sleep I get per day. On average I am sleeping (laying down) about 6-7 hours per day. (The quality of the rest is another matter entirely.) However, the total time spent napping has increased from approx. 2-3 hours/day to between 3-5 hours per day. The naps don't happen with any regularity or pattern--they just happen. I suddenly feel sleepy, and usually withing 5 minutes or so I am asleep (most often in a sitting or reclining position). Then, after I've slept for whatever time period, I am having increasing difficulty waking from the naps; often waking for only a few minutes before sleeping once again.
In spite of all of the sleep, I am finding that my exhaustion not only continues, but seems to be increasing as well. So, I go about my days feeling as if I'll fall asleep at any time...which again, is happening with greater frequency.
My headache remains at its elevated level 24/7. There is no longer even a slight break from its relentless pain.
The ammonia I smell (and often taste) has been bad again. I'm often waving my hand in front of my face in a vain attempt to get it away from my nose. At least I can feel like I'm able to do something about it; even though it is, in actuality, completely useless.
Over the last couple of days the kidney area on my back has been increasingly painful. Today it is the worst. I cannot sit back against anything firm (let along hard) for more than a minute before I'm very uncomfortable and squirming around. In fact, as I write this entry, I am sitting forward on the chair, leaning on my left elbow--just trying to be a bit more comfortable...but it's not really working. Oh well--it's still better than resting against the chair back.
The edema in my legs and hands is quite visible today. My fingers are looking like sausage links today, and my ankles are almost gone. Both my hands and feet have been itching a lot lately, so I really shouldn't be surprised. Right now the edemic tests are:
-Lower Arms-- Color +2, Rebound +5
-Hands/Fingers-- Color +2, Rebound +5
-Knees-- Color +2, Rebound +5
-Shins-- Color +3, Rebound >> +15
Ankles-- Color +3.5, Rebound >> +20
Feet (at the metatarsals-- Color +3, Rebound >>+25
*>> = Greater than.
So...yeah. Lots of edema today.
Lastly, I wanted to pass on that my taking my daily meds has been causing me increased discomfort over what has been previously going on. I usually take the Zantac 10-15 minutes ahead of the rest of my meds to help my stomach settle down prior to assaulting it with all the meds I have to ingest. Doing this has led to a marked decrease in the incidents of nausea precipitated by ingestion of meds. Over the last three days, I have become intensely nauseated in spite of the Zantac.
Between the time I awaken and the time I take the meds my stomach is usually doing...alright (relatively speaking). After I take my meds, the nausea increases, but not intensely. These past few days, once I ingest the meds, nausea hits me like those overwhelming onsets that come out of the blue; and nothing alleviates its. I really don't want to take the Promethazine (anti-emetic) because of this; but if it keeps up, I'll have to do just that. Eeeww.
That's it for today, I think. But, like always, I can't remember for sure.
I may or may not get another entry done before Christmas. We'll see.
Good Health to All!
ScottW
Wednesday, December 15, 2010
15 Dec. 2010
The exhaustion continues unabated.
Each of the past two nights--well...day times, for me--I've gotten eight and six hours of so-called sleep. I am awaking multiple times whenever I can actually sleep, leading to an increase in how tired I am. Plus, my frequent naps also continue to be of little avail towards helping alleviate the exhaustion.
For instance, last night (Tuesday) I napped on and off for nearly three hours late in the evening. This after I had only been awake for four hours. Since fully waking from that series of naps, I have dozed off several times, but always wake up after about fifteen minutes and cannot sleep longer. So, here it is 0724a (Wednesday). I'm exhausted, sleepy. Hopefully when I lay down (after writing this blog entry), I'll be able to finally sleep.
But, drifting off to sleep is its own issue. Every time I lay down my abdomen feels terrible. Not always nauseated, mind you; just...as if I've got an upset stomach that hasn't made me sick yet. (That's really the best I can describe it.) Anyway, it's always there when I lay down. Last "night" it was really bad and I took nearly an hour to fall asleep because of it. Nothing I have really helps reduce it--aside from the anti-emetic. But, you all know I don't take that unless I really have to. So, I take Tums and tolerate feeling that as I try to sleep.
Also, my headache had a nasty ramp-up last night. Out of nowhere it took off from its new normal of 8 up to a 9.5 withing about twenty minutes. I don't know why it did; but it took a total of three T3's (over a four hour period) to reduce the headache to a manageable level.
On the more sensitive side, I had already told you months ago about slight urinary incontinence that only occurs after urination. Most of the time I just wait longer to be sure nothing else from my bladder is still making its way out. This is rarely an issue so long as I make sure even the dribbling flow has stopped. So, over the last week or so I've noticed on numerous occasions that my normal waiting has not been sufficient. I think it's all out, only to be surprised by additional dribbling leakage after I've exited the restroom. This is extremely disconcerting, to say the least. I've already noted this for the next doctor visit in early January. *By the way, urinary incontinence (slight or strong) is a common S/S of the PCKD. Luckily for me, it has thus far been a pretty minor concern.
What else...
-The diarrhea has been minimal lately.(Thank goodness!)
-My appetite is still terrible.
-My total liquid consumption remains inadequate. (I'm still not thirsty...ever!)
-The blurriness of my vision has increased and stayed that way.
-Ammonia smell is everywhere; in everything. Ugh!
-My feet and hands feel frozen just about all of the time. I'm getting used to it; but anyone else touching my hands or feet feel just how cold they really are!
-My whole body remains cold, as well. Right now my house is at 74 degrees and I am cold!
-The dryness of my face and scalp continues. Nothing helps it.
-Vertigo, vertigo, vertigo...'nuff said.
That's everything I can think of right now. (Hey...I got a few things coherently written today!)
I'm off to try and sleep....
Good Health to All!
ScottW
Each of the past two nights--well...day times, for me--I've gotten eight and six hours of so-called sleep. I am awaking multiple times whenever I can actually sleep, leading to an increase in how tired I am. Plus, my frequent naps also continue to be of little avail towards helping alleviate the exhaustion.
For instance, last night (Tuesday) I napped on and off for nearly three hours late in the evening. This after I had only been awake for four hours. Since fully waking from that series of naps, I have dozed off several times, but always wake up after about fifteen minutes and cannot sleep longer. So, here it is 0724a (Wednesday). I'm exhausted, sleepy. Hopefully when I lay down (after writing this blog entry), I'll be able to finally sleep.
But, drifting off to sleep is its own issue. Every time I lay down my abdomen feels terrible. Not always nauseated, mind you; just...as if I've got an upset stomach that hasn't made me sick yet. (That's really the best I can describe it.) Anyway, it's always there when I lay down. Last "night" it was really bad and I took nearly an hour to fall asleep because of it. Nothing I have really helps reduce it--aside from the anti-emetic. But, you all know I don't take that unless I really have to. So, I take Tums and tolerate feeling that as I try to sleep.
Also, my headache had a nasty ramp-up last night. Out of nowhere it took off from its new normal of 8 up to a 9.5 withing about twenty minutes. I don't know why it did; but it took a total of three T3's (over a four hour period) to reduce the headache to a manageable level.
On the more sensitive side, I had already told you months ago about slight urinary incontinence that only occurs after urination. Most of the time I just wait longer to be sure nothing else from my bladder is still making its way out. This is rarely an issue so long as I make sure even the dribbling flow has stopped. So, over the last week or so I've noticed on numerous occasions that my normal waiting has not been sufficient. I think it's all out, only to be surprised by additional dribbling leakage after I've exited the restroom. This is extremely disconcerting, to say the least. I've already noted this for the next doctor visit in early January. *By the way, urinary incontinence (slight or strong) is a common S/S of the PCKD. Luckily for me, it has thus far been a pretty minor concern.
What else...
-The diarrhea has been minimal lately.(Thank goodness!)
-My appetite is still terrible.
-My total liquid consumption remains inadequate. (I'm still not thirsty...ever!)
-The blurriness of my vision has increased and stayed that way.
-Ammonia smell is everywhere; in everything. Ugh!
-My feet and hands feel frozen just about all of the time. I'm getting used to it; but anyone else touching my hands or feet feel just how cold they really are!
-My whole body remains cold, as well. Right now my house is at 74 degrees and I am cold!
-The dryness of my face and scalp continues. Nothing helps it.
-Vertigo, vertigo, vertigo...'nuff said.
That's everything I can think of right now. (Hey...I got a few things coherently written today!)
I'm off to try and sleep....
Good Health to All!
ScottW
Sunday, December 12, 2010
12 Dec. 2010
I feel like I'm being redundant; but again, I've feel feeling exhausted as never before.
Dragging around; no energy; multiple naps each day; more exhaustion, etc, etc, etc. Along with all of that, the nausea has taken a sharp rise--along with the vertigo, the headache, and more of the other S/S's.
I don't know where to start besides exhaustion. I'm talking physical and mental. As before I'm apparently not sleep well. I continue to awaken feeling as worn out as when I went to sleep. Plus, I've now had a confirmed increase in the number of naps I each day. It's not uncommon for me to take between 3-5 naps per day of between 20 minutes to two hours. Only an hour or so after awaking I'm already dozing off [most days]. But in spite of the naps, I am getting progressively more exhausted.
(I've been writing, rewriting, and rewriting this next part for the last twenty minutes, and I can't seem to put a coherent thought together. My apologies.)
So, I'll wrap it up.
I'll try not to go more than two days between entries. I'm obviously having a difficult time writing out thoughts and information.
Until next time...
Good Health to All!
ScottW
Dragging around; no energy; multiple naps each day; more exhaustion, etc, etc, etc. Along with all of that, the nausea has taken a sharp rise--along with the vertigo, the headache, and more of the other S/S's.
I don't know where to start besides exhaustion. I'm talking physical and mental. As before I'm apparently not sleep well. I continue to awaken feeling as worn out as when I went to sleep. Plus, I've now had a confirmed increase in the number of naps I each day. It's not uncommon for me to take between 3-5 naps per day of between 20 minutes to two hours. Only an hour or so after awaking I'm already dozing off [most days]. But in spite of the naps, I am getting progressively more exhausted.
(I've been writing, rewriting, and rewriting this next part for the last twenty minutes, and I can't seem to put a coherent thought together. My apologies.)
So, I'll wrap it up.
I'll try not to go more than two days between entries. I'm obviously having a difficult time writing out thoughts and information.
Until next time...
Good Health to All!
ScottW
Wednesday, December 8, 2010
08 Dec. 2010
Really rough Monday night.
My nausea had been held in relative check all day. At about 1130p I went from mild nausea to intense in about two minutes. I don't know what precipitated the sudden onset. My usual one meal of the day settled OK, and I had a good balance of liquids all day. The overwhelming nausea literally happened for no apparent reason.
Two tums did absolutely nothing to stem the rapid onset. So I downed a half dose of the anti-emetic. Even by this point (two minutes) it was too late to try and head off how I'd end up feeling. At 30 minutes I was still miserable, so I took another half dose Promethazine. (I think next time the onset happens like that that I should just take a full dose immediately!)
By the time an hour [since onset] had passed, I was finally getting comfortable. It took another hour beyond that to get the nausea calmed enough that I could actually sleep. In spite of the Promethazine my sleep was extremely restless, and I remember a number of times of waking just enough to feel the nausea, but was able to get back to sleep. Unfortunately, that went on all night.
I awoke after six hours of "sleep" feeling better, but having to put up with the side effects of the anti-emetic. Those side effects actually stayed with me most of the day. (I guess my kidneys aren't filtering too well these days!) But, at least I didn't have a lot of nausea most of the day...until Tuesday evening, that is. The good news is that tonight's episode didn't turn into a nasty time like Monday night.
The only other significant mention to day is my headache. It had been at a 8+ for the past few weeks--well, I think it's now inching closer to a consistent 8.5+. My head is pounding just about every second with little relief; even with using the T3's.
Anyway, I just wanted to mention this latest (and very sudden) bout of overwhelming nausea. It was definitely a new type and speed of onset. Not fun!
Good Health to All!
ScottW
My nausea had been held in relative check all day. At about 1130p I went from mild nausea to intense in about two minutes. I don't know what precipitated the sudden onset. My usual one meal of the day settled OK, and I had a good balance of liquids all day. The overwhelming nausea literally happened for no apparent reason.
Two tums did absolutely nothing to stem the rapid onset. So I downed a half dose of the anti-emetic. Even by this point (two minutes) it was too late to try and head off how I'd end up feeling. At 30 minutes I was still miserable, so I took another half dose Promethazine. (I think next time the onset happens like that that I should just take a full dose immediately!)
By the time an hour [since onset] had passed, I was finally getting comfortable. It took another hour beyond that to get the nausea calmed enough that I could actually sleep. In spite of the Promethazine my sleep was extremely restless, and I remember a number of times of waking just enough to feel the nausea, but was able to get back to sleep. Unfortunately, that went on all night.
I awoke after six hours of "sleep" feeling better, but having to put up with the side effects of the anti-emetic. Those side effects actually stayed with me most of the day. (I guess my kidneys aren't filtering too well these days!) But, at least I didn't have a lot of nausea most of the day...until Tuesday evening, that is. The good news is that tonight's episode didn't turn into a nasty time like Monday night.
The only other significant mention to day is my headache. It had been at a 8+ for the past few weeks--well, I think it's now inching closer to a consistent 8.5+. My head is pounding just about every second with little relief; even with using the T3's.
Anyway, I just wanted to mention this latest (and very sudden) bout of overwhelming nausea. It was definitely a new type and speed of onset. Not fun!
Good Health to All!
ScottW
Monday, December 6, 2010
06 Dec. 2010
Tired. Exhausted. Fatigued.
That pretty much sums up how things have been the past few days. That is, those things are in addition to the usual S/S's I'm lucky enough to experience day in, and day out.
My now year+ headache has been slamming me pretty hard. I'm still only taking a single T3 at a time, but I'm having to take more every day in order to sort of keep the headache under control.
I've been smelling ammonia really strong the past week. There are days I wish I had no smell because of how prevalent the ammonia is. When I burp it is even worse. I've been sucking on breath mints more than ever just to combat the smell.
My appetite has been up and down. I swing between 1-3 cups of food per day.
The vertigo has been constant. Most of the time I cannot be standing to drink a glass of liquid because tilting my head back brings waves of dizziness. So, I'm now sitting most times I have anything to drink.
The nausea has been up and down as well. Eating still intensifies it; but I've actually had a few hours when I was feeling not so bad. I'll take those times anytime I can get 'em!
My sleep continues to be poor, at best. I'm waking multiple times per night, and then end up sleeping a few hours just about every day; and sometimes I'm napping more than once per day. Sunday I had about six hours of restless sleep, then I took three more naps throughout the day totaling about five more hours. Today I took (I thinks) eight catnaps of about 15 minutes each. After all of that, I still feel like I've been working my butt off all day and am feeling simply exhausted.
The dry skin on my scalp and chin continues to be evident. I'm only able to just keep it from getting really bad.
All the edema I'm seeing has not fluctuated over the past week. It has remained at a constant 3+ on color in my legs (knees, tib/fib, and feet), and 7+ on rebound in the same areas. Plus, the edema in my hands (various points including fingers) has also remained the same at 3+ color and 6+ rebound.
My short term memory continues to be a source of great frustration for me. I'm not doing anything creative at this point simply because I can't concentrate on things; nor can I remember details that come to mind, because by the time I finish writing a thought, the previous things I wanted to write are just gone; and no matter how much I think, I can't recall something that was in my brain mere moments before.
As I noted previously, my urine continues to be quite odorous. It doesn't matter how much water I do or don't drink, the odor is always quite strong.
Lastly, the cold I feel has been all day, every day. I'm almost always wearing a coat or fleece, sweat pants and (sometimes) the heavy socks. Yes, I'm still sleeping under three quilts and only feel comfortable. I've had two times when I couldn't get warm in bed and my feet felt like popcicles to the touch.
That's it for today. I'm out of strength or inclination to write any more.
Good Health to All!
ScottW
That pretty much sums up how things have been the past few days. That is, those things are in addition to the usual S/S's I'm lucky enough to experience day in, and day out.
My now year+ headache has been slamming me pretty hard. I'm still only taking a single T3 at a time, but I'm having to take more every day in order to sort of keep the headache under control.
I've been smelling ammonia really strong the past week. There are days I wish I had no smell because of how prevalent the ammonia is. When I burp it is even worse. I've been sucking on breath mints more than ever just to combat the smell.
My appetite has been up and down. I swing between 1-3 cups of food per day.
The vertigo has been constant. Most of the time I cannot be standing to drink a glass of liquid because tilting my head back brings waves of dizziness. So, I'm now sitting most times I have anything to drink.
The nausea has been up and down as well. Eating still intensifies it; but I've actually had a few hours when I was feeling not so bad. I'll take those times anytime I can get 'em!
My sleep continues to be poor, at best. I'm waking multiple times per night, and then end up sleeping a few hours just about every day; and sometimes I'm napping more than once per day. Sunday I had about six hours of restless sleep, then I took three more naps throughout the day totaling about five more hours. Today I took (I thinks) eight catnaps of about 15 minutes each. After all of that, I still feel like I've been working my butt off all day and am feeling simply exhausted.
The dry skin on my scalp and chin continues to be evident. I'm only able to just keep it from getting really bad.
All the edema I'm seeing has not fluctuated over the past week. It has remained at a constant 3+ on color in my legs (knees, tib/fib, and feet), and 7+ on rebound in the same areas. Plus, the edema in my hands (various points including fingers) has also remained the same at 3+ color and 6+ rebound.
My short term memory continues to be a source of great frustration for me. I'm not doing anything creative at this point simply because I can't concentrate on things; nor can I remember details that come to mind, because by the time I finish writing a thought, the previous things I wanted to write are just gone; and no matter how much I think, I can't recall something that was in my brain mere moments before.
As I noted previously, my urine continues to be quite odorous. It doesn't matter how much water I do or don't drink, the odor is always quite strong.
Lastly, the cold I feel has been all day, every day. I'm almost always wearing a coat or fleece, sweat pants and (sometimes) the heavy socks. Yes, I'm still sleeping under three quilts and only feel comfortable. I've had two times when I couldn't get warm in bed and my feet felt like popcicles to the touch.
That's it for today. I'm out of strength or inclination to write any more.
Good Health to All!
ScottW
Saturday, December 4, 2010
04 Dec. 2010
My Friday came and went without much recognition on my part.
On Wednesday and Thursday I was feeling really off. I was weak, my head hurt at the elevated level, I've been eating less than normal (and what food I did eat was thoroughly unappetizing), and I've had a real mental struggle as well.
Then on Thursday night my food didn't sit well; and even though I wasn't unusually nauseated, I was just feeling increasingly yucky. Nothing specific, mind you...just yucky. When I was finally able to sleep I was only out for about four hours. Intense Nausea woke me up, so I took a half dose of Promethazine. About an hour passed before I was nausea free; then I slept for another four hours. After I awoke from that sleep, I had a full barrage of the usual side effects [from the Promethazine], and groggily stayed awake for about three hours before sleeping again for another three hours. By this time it was 10p, and my whole Friday was pretty much gone.
And that has been my day. Fun...I know.
And, that's really all I feel like writing tonight.
Good Health to All.
ScottW
On Wednesday and Thursday I was feeling really off. I was weak, my head hurt at the elevated level, I've been eating less than normal (and what food I did eat was thoroughly unappetizing), and I've had a real mental struggle as well.
Then on Thursday night my food didn't sit well; and even though I wasn't unusually nauseated, I was just feeling increasingly yucky. Nothing specific, mind you...just yucky. When I was finally able to sleep I was only out for about four hours. Intense Nausea woke me up, so I took a half dose of Promethazine. About an hour passed before I was nausea free; then I slept for another four hours. After I awoke from that sleep, I had a full barrage of the usual side effects [from the Promethazine], and groggily stayed awake for about three hours before sleeping again for another three hours. By this time it was 10p, and my whole Friday was pretty much gone.
And that has been my day. Fun...I know.
And, that's really all I feel like writing tonight.
Good Health to All.
ScottW
Wednesday, December 1, 2010
01 Dec. 2010
Ok, here's the latest...
*In the last six weeks my kidneys have stayed at 22.2% function. So for now, I remain at near-end stage.
*Blood Glucose 95 (normal 65-109). No diabetic development!
*Hematocrit 37.1 (42-52). RBC production has dropped off .6%. So, anemia is progressing again.
*WBC's 4.90 (4.5-11.0), a drop of .82. Anemia is also affecting the WBC production.
*Parathyroid Hormone 75.9 (12-88), a drop of 6.5.
...(OK, it's now early Saturday morning. I've been feeling terrible and just haven't felt up to finishing this post properly. So, for now, things are the same; but we're also on the lookout for signs of my body crashing. The longer I go like this, the greater the possibility of that happening.
So, that's the whole update. I'll do another quick update dated this morning.)
Good Health to All!
ScottW
*In the last six weeks my kidneys have stayed at 22.2% function. So for now, I remain at near-end stage.
*Blood Glucose 95 (normal 65-109). No diabetic development!
*Hematocrit 37.1 (42-52). RBC production has dropped off .6%. So, anemia is progressing again.
*WBC's 4.90 (4.5-11.0), a drop of .82. Anemia is also affecting the WBC production.
*Parathyroid Hormone 75.9 (12-88), a drop of 6.5.
...(OK, it's now early Saturday morning. I've been feeling terrible and just haven't felt up to finishing this post properly. So, for now, things are the same; but we're also on the lookout for signs of my body crashing. The longer I go like this, the greater the possibility of that happening.
So, that's the whole update. I'll do another quick update dated this morning.)
Good Health to All!
ScottW
Saturday, November 27, 2010
27 Nov. 2010
Well, the headache is under control.
I awoke Wednesday afternoon with the headache down from a 9.75 to an 8. I was only able to keep it there with a T3 and two regular Tylenol every four hours. Also on Wednesday, I was feeling better overall; though by the time I'd get home from doing the blood draw [and subsequent errands] I'd be feeling lousy again.
On the labs, I had the usual tests being run (CBC, Parathyroid, UA, Renal Panel, etc.). My blood was dark and extremely cloudy; and my urine was very yellow and smelly (which it has been the last few months). I've got my next appointment this coming Tuesday, 30 Nov. Be sure to check back for the latest lab results either Tuesday night, or Wednesday.
Anyway, after running around on Wednesday I was feeling terrible with extreme vertigo, intense nausea, blurry vision and increased edema. I remained feeling like this the rest of the day.
Thursday, Thanksgiving day, I was still feeling off. I knew that feeling worse was just a nudge away, so I tried everything to keep my body from going over the edge. We had my son and his family over (my Chef daughter cooked the meal!) and I greatly enjoyed my grand kids. I made sure not to push myself in playing; which I was successful at. However, it was Thanksgiving dinner itself that sent my body into waves of nausea and overwhelming blah-ness.
I didn't even finish my small plate before I had to lay down. Before too long I was asleep, and stayed that way for nearly five hours. By the time I awoke, everyone was gone and the holiday celebration had wrapped up. I felt terrible that I had disappeared on everyone; but I was assured that no one was upset and they completely understood.
It ended up that I was awake just four hours before sleeping once again for another six hours. After awaking yesterday, I was exhausted like I'd just gotten finished working a long, physically grueling day. My headache remained barely under control, sitting at an 8.5 all day. The nausea was a bit better; though my appetite was zero. What food I ate (about two cups total) was downed only because I had to have food. Nothing sounded or even tasted very good. The vertigo and edema were both reduced, but my vision was terrible. Overall, Friday wasn't a bad day...though it wasn't a good day, either.
Even after all the sleep I'd gotten over the last two days, I was still asleep by 1a, and slept until after 9a--another eight hours; and I am STILL feeling exhausted. The headache is still present at an 8.5, and my vision is so blurry that I am having trouble reading the text I'm writing for this blog (which I'm reading on a 23" monitor!). I've clearly gotten increased edema in both my legs and hands, and I've been having my heart race a number of times today. About the only good news so far today is that the nausea is acceptable. It's not gone; but it's not causing me problems, either. I'll certainly take that small victory!
The only other constant is that I've been cold, cold, cold! I'm talking freezing while sitting in a 72 degree room, while covered in a quilt; that when I take my hands and feet out, are cold to the touch. I simply can't get warm no matter how much I wear, or how many quilts I'm under. For me, there is no warm any more. I had a day earlier this week when my feet felt like popsicles. I put on a pair of polypropylene socks, as well as a pair of thick wool hiking socks, then covered up with a quilt. Two hours later, my feet were still freezing, and were cold to the touch. That's cold!
And that, my friends, is about all I've got for today. I'm ecstatic that the nasty headache I had on Tuesday/Wednesday is now just painful...that's a huge relief!
As ever, I'm looking towards a better day, and looking at a bright future. Things will get better; I just have to get past this bump in the road before moving forward once again.
Have a great weekend!
Good Health to All!
ScottW
I awoke Wednesday afternoon with the headache down from a 9.75 to an 8. I was only able to keep it there with a T3 and two regular Tylenol every four hours. Also on Wednesday, I was feeling better overall; though by the time I'd get home from doing the blood draw [and subsequent errands] I'd be feeling lousy again.
On the labs, I had the usual tests being run (CBC, Parathyroid, UA, Renal Panel, etc.). My blood was dark and extremely cloudy; and my urine was very yellow and smelly (which it has been the last few months). I've got my next appointment this coming Tuesday, 30 Nov. Be sure to check back for the latest lab results either Tuesday night, or Wednesday.
Anyway, after running around on Wednesday I was feeling terrible with extreme vertigo, intense nausea, blurry vision and increased edema. I remained feeling like this the rest of the day.
Thursday, Thanksgiving day, I was still feeling off. I knew that feeling worse was just a nudge away, so I tried everything to keep my body from going over the edge. We had my son and his family over (my Chef daughter cooked the meal!) and I greatly enjoyed my grand kids. I made sure not to push myself in playing; which I was successful at. However, it was Thanksgiving dinner itself that sent my body into waves of nausea and overwhelming blah-ness.
I didn't even finish my small plate before I had to lay down. Before too long I was asleep, and stayed that way for nearly five hours. By the time I awoke, everyone was gone and the holiday celebration had wrapped up. I felt terrible that I had disappeared on everyone; but I was assured that no one was upset and they completely understood.
It ended up that I was awake just four hours before sleeping once again for another six hours. After awaking yesterday, I was exhausted like I'd just gotten finished working a long, physically grueling day. My headache remained barely under control, sitting at an 8.5 all day. The nausea was a bit better; though my appetite was zero. What food I ate (about two cups total) was downed only because I had to have food. Nothing sounded or even tasted very good. The vertigo and edema were both reduced, but my vision was terrible. Overall, Friday wasn't a bad day...though it wasn't a good day, either.
Even after all the sleep I'd gotten over the last two days, I was still asleep by 1a, and slept until after 9a--another eight hours; and I am STILL feeling exhausted. The headache is still present at an 8.5, and my vision is so blurry that I am having trouble reading the text I'm writing for this blog (which I'm reading on a 23" monitor!). I've clearly gotten increased edema in both my legs and hands, and I've been having my heart race a number of times today. About the only good news so far today is that the nausea is acceptable. It's not gone; but it's not causing me problems, either. I'll certainly take that small victory!
The only other constant is that I've been cold, cold, cold! I'm talking freezing while sitting in a 72 degree room, while covered in a quilt; that when I take my hands and feet out, are cold to the touch. I simply can't get warm no matter how much I wear, or how many quilts I'm under. For me, there is no warm any more. I had a day earlier this week when my feet felt like popsicles. I put on a pair of polypropylene socks, as well as a pair of thick wool hiking socks, then covered up with a quilt. Two hours later, my feet were still freezing, and were cold to the touch. That's cold!
And that, my friends, is about all I've got for today. I'm ecstatic that the nasty headache I had on Tuesday/Wednesday is now just painful...that's a huge relief!
As ever, I'm looking towards a better day, and looking at a bright future. Things will get better; I just have to get past this bump in the road before moving forward once again.
Have a great weekend!
Good Health to All!
ScottW
Wednesday, November 24, 2010
24 Nov. 2010
Alright...my head is killing me, so I'll keep this brief...
Saturday was an OK day.
Sunday was as well.
Monday I was still doing pretty good, though I could feel my body getting blah.
Yesterday I had a doozy of a headache hit me, the edema was increased, my eyesight was poor, ammonia smell has been nasty, my appetite was non-existant, and I haven't been able to control my headache. It's been at a constant 9.75 since Tuesday afternoon. NOTHING is helping it and I've been in terrible pain.
The headache doesn't feel or taste like a TMD headache; but when I sleep [in a little while from now], I'll use my TMD mouth guards just to see if they help.
Also, I'm doing a blood draw today for my next round of tests. The next nephrology appointment is on the 30th.
That's all. I'm going to go lay down now. I hope that a little sleep helps reduce the headache at least a little.
Good Health to All!
ScottW
Saturday was an OK day.
Sunday was as well.
Monday I was still doing pretty good, though I could feel my body getting blah.
Yesterday I had a doozy of a headache hit me, the edema was increased, my eyesight was poor, ammonia smell has been nasty, my appetite was non-existant, and I haven't been able to control my headache. It's been at a constant 9.75 since Tuesday afternoon. NOTHING is helping it and I've been in terrible pain.
The headache doesn't feel or taste like a TMD headache; but when I sleep [in a little while from now], I'll use my TMD mouth guards just to see if they help.
Also, I'm doing a blood draw today for my next round of tests. The next nephrology appointment is on the 30th.
That's all. I'm going to go lay down now. I hope that a little sleep helps reduce the headache at least a little.
Good Health to All!
ScottW
Friday, November 19, 2010
19 Nov. 2010
Another break...sort of.
The rest of Monday was more of the same [as the weekend]. The only bright spot was seeing my grand kids, playing with them; laughing with them, too. It was truly a wonderful treat. They really are my greatest joy. The only hitch in my visit was getting a severe wave of vertigo while I was carrying the one year-old. Luckily, my son was there to take him out of my arms.
Monday night I actually fell asleep before midnight--Woo-Hoo! The sleep I got was fairly good; but still not enough as I was fully awake again by 345a. However, the nausea was reduced to a tolerable level, and my headache had dropped to about a 7--Yay!!! I was by no means comfortable, or even feeling very good--but at least I was getting a break from the last four days!
I ended up falling asleep by 10a, and I don't think I moved until around 5p. The sleep was restful and calm (finally!), and I woke up feeling awake and alert for the first time since last Thursday. Yeah, all that sleep was really gonna screw up my already screwy sleep schedule; but at least I was rested. Plus, when I awoke, the nausea and headache were still reduced, and I actually felt hungry. All too soon that hunger turned to nausea...but hey! I was feeling a bit better; for a little while at least. Before the evening had ended, everything had returned; but I was so glad for even a half day's break!
Wednesday found me just having a miserable day. While the nausea was reduced, the headache was simply painful. I was barely able to keep it in check. Plus, as the day wore on I could feel and see the edema increase in my legs and hands. When I tried eating that night, I had about a whole cup of food and couldn't eat anymore because everything looked and tasted completely unappetizing. At least I got some food down.
I slept pretty well Thursday morning, and awoke to a reduction of the nausea, headache, ammonia smell and
(OK...my mind is going blank about my S/S's. I can't remember what they are aside from a few...(sigh). Let me try another way...)
Thursday found me feeling just blah and somewhat exhausted all day. Plus, the headache increased slowly throughout the day from a painful (but tolerable) 7, up to a simply painful 9. I couldn't stop it from happening. Additionally
(I'm sorry...my mind is just continuing to draw a blank about specifics from yesterday. Let's just say that it was an OK day that devolved into a bad day; and leave it at that.)
I'm hoping for a good day. If I'm feeling up to it, I'm going to try and get to at least one movie.
I hope you all have a great weekend!
Good Health to All!
ScottW
The rest of Monday was more of the same [as the weekend]. The only bright spot was seeing my grand kids, playing with them; laughing with them, too. It was truly a wonderful treat. They really are my greatest joy. The only hitch in my visit was getting a severe wave of vertigo while I was carrying the one year-old. Luckily, my son was there to take him out of my arms.
Monday night I actually fell asleep before midnight--Woo-Hoo! The sleep I got was fairly good; but still not enough as I was fully awake again by 345a. However, the nausea was reduced to a tolerable level, and my headache had dropped to about a 7--Yay!!! I was by no means comfortable, or even feeling very good--but at least I was getting a break from the last four days!
I ended up falling asleep by 10a, and I don't think I moved until around 5p. The sleep was restful and calm (finally!), and I woke up feeling awake and alert for the first time since last Thursday. Yeah, all that sleep was really gonna screw up my already screwy sleep schedule; but at least I was rested. Plus, when I awoke, the nausea and headache were still reduced, and I actually felt hungry. All too soon that hunger turned to nausea...but hey! I was feeling a bit better; for a little while at least. Before the evening had ended, everything had returned; but I was so glad for even a half day's break!
Wednesday found me just having a miserable day. While the nausea was reduced, the headache was simply painful. I was barely able to keep it in check. Plus, as the day wore on I could feel and see the edema increase in my legs and hands. When I tried eating that night, I had about a whole cup of food and couldn't eat anymore because everything looked and tasted completely unappetizing. At least I got some food down.
I slept pretty well Thursday morning, and awoke to a reduction of the nausea, headache, ammonia smell and
(OK...my mind is going blank about my S/S's. I can't remember what they are aside from a few...(sigh). Let me try another way...)
Thursday found me feeling just blah and somewhat exhausted all day. Plus, the headache increased slowly throughout the day from a painful (but tolerable) 7, up to a simply painful 9. I couldn't stop it from happening. Additionally
(I'm sorry...my mind is just continuing to draw a blank about specifics from yesterday. Let's just say that it was an OK day that devolved into a bad day; and leave it at that.)
I'm hoping for a good day. If I'm feeling up to it, I'm going to try and get to at least one movie.
I hope you all have a great weekend!
Good Health to All!
ScottW
Monday, November 15, 2010
15 Nov. 2010
The small break is definitely over.
Friday found me dealing with a constant headache of an 8.5+, increased edema in my legs and hands, increased vertigo, decreased appetite and several bouts of diarrhea. Plus, I had slept poorly on Friday night, so i was exhausted all day Saturday.
Additionally [on Saturday], my appetite was non-existent. The only reason I ate anything was simply to put food into my body. Unfortunately, the small meal I made was so unappetizing that I literally had four bites and just couldn't stomach any more. That was the extent of my food intake for all of Saturday.
However, on Saturday night, I had my worst night of sleep yet. I laid down for sleep at 0300a, but couldn't get to sleep until after 0400a. What followed was just terrible rest. I would awaken after 30-45 minutes, then not be able to get back to sleep for at least 15 minutes. This went on for all of 3.5 hours when I woke up and couldn't get back to sleep at all. Over the course of all day Sunday, I got naps totaling all of about 1.5 hours; and even then, what sleep I got was as fitful as earlier. I finally went to sleep at 10p last night; but only slept for 3.75 hours before again waking and not being able to get back to sleep--again--this morning at 0145a.
On top of that, I've had a headache since waking yesterday that has been at a constant 9.5. Even T3's were barely keeping the headache in check. I know a part of the intensity of the headache is my lack of sleep (all of 8.75 hours over the last two days); but not being able to get quality sleep is really taking its toll both mentally, and physically.
Besides being utterly exhausted on Sunday (in addition to the headache), I again had zero appetite. I did eat one small BLT sandwich; but even though it initially sounded good, actually eating it proved to be difficult. Right now, it seems as if everything is unappetizing. No reason as to why, it just is. Hopefully, this will pass soon; because I need food in my body; fuel to keep it operating as best it can.
So, here I'm going into Monday, exhausted beyond anything I have yet experienced, headache raging, edema increasing, and not being able to get any quality sleep. Not the best of days. I'm trying to be positive in this entry--and I know that I'm failing miserably--because my mind is still in a strong, positive place, even though my body is betraying that.
So, let me simply conclude with telling you that, in spite of my utter exhaustion, intense headache and almost complete lack of food over the last two days, I remain upbeat, mentally unbowed, and ready to face the coming day. After all, I've got my grand kids coming by this afternoon, and they always lift my spirits!
So, that's all for now. There was something else I wanted to tell you; but I have completely forgotten. In light of that, I hope all of you, my readers, have very successful, fulfilling and rewarding few days ahead!
Good Health to All!
ScottW
Friday found me dealing with a constant headache of an 8.5+, increased edema in my legs and hands, increased vertigo, decreased appetite and several bouts of diarrhea. Plus, I had slept poorly on Friday night, so i was exhausted all day Saturday.
Additionally [on Saturday], my appetite was non-existent. The only reason I ate anything was simply to put food into my body. Unfortunately, the small meal I made was so unappetizing that I literally had four bites and just couldn't stomach any more. That was the extent of my food intake for all of Saturday.
However, on Saturday night, I had my worst night of sleep yet. I laid down for sleep at 0300a, but couldn't get to sleep until after 0400a. What followed was just terrible rest. I would awaken after 30-45 minutes, then not be able to get back to sleep for at least 15 minutes. This went on for all of 3.5 hours when I woke up and couldn't get back to sleep at all. Over the course of all day Sunday, I got naps totaling all of about 1.5 hours; and even then, what sleep I got was as fitful as earlier. I finally went to sleep at 10p last night; but only slept for 3.75 hours before again waking and not being able to get back to sleep--again--this morning at 0145a.
On top of that, I've had a headache since waking yesterday that has been at a constant 9.5. Even T3's were barely keeping the headache in check. I know a part of the intensity of the headache is my lack of sleep (all of 8.75 hours over the last two days); but not being able to get quality sleep is really taking its toll both mentally, and physically.
Besides being utterly exhausted on Sunday (in addition to the headache), I again had zero appetite. I did eat one small BLT sandwich; but even though it initially sounded good, actually eating it proved to be difficult. Right now, it seems as if everything is unappetizing. No reason as to why, it just is. Hopefully, this will pass soon; because I need food in my body; fuel to keep it operating as best it can.
So, here I'm going into Monday, exhausted beyond anything I have yet experienced, headache raging, edema increasing, and not being able to get any quality sleep. Not the best of days. I'm trying to be positive in this entry--and I know that I'm failing miserably--because my mind is still in a strong, positive place, even though my body is betraying that.
So, let me simply conclude with telling you that, in spite of my utter exhaustion, intense headache and almost complete lack of food over the last two days, I remain upbeat, mentally unbowed, and ready to face the coming day. After all, I've got my grand kids coming by this afternoon, and they always lift my spirits!
So, that's all for now. There was something else I wanted to tell you; but I have completely forgotten. In light of that, I hope all of you, my readers, have very successful, fulfilling and rewarding few days ahead!
Good Health to All!
ScottW
Thursday, November 11, 2010
11 Nov. 2010
Well, after all these weeks, a little break.
On Wednesday I awoke feeling somewhat refreshed, the headache was tolerable, the nausea not overly intense, and the vertigo somewhat reduced. It stayed like that until the evening when the nausea and headache ramped up. But, it was a definite break...and I'll take that.
It seems like my year+ headache has elevated to a new average level. For the past week it has been averaging at about an 8; and there have been multiple spikes to the 9.5-10 range; though nothing sustained at that level. I had one of those spike late last night. The headache literally went from average to a 10 within minutes. I wasn't doing anything to precipitate the spike--it just happened. After taking a T3, I immediately lay down, closed my eyes, and just waited. After 30 minutes it (the headache) had not subsided, so I took another T3. Thirty minutes after that, the excruciating pain was gone, and it was once again tolerable.
As you have been able to see, I'm having a difficult time writing my blog with any consistency. Remembering has been the biggest problem. I can be doing something and think, "I need to catch up on my blog." Within seconds I have completely forgotten that thought and go on to other things.
Also, writing is getting more difficult. As I [believe] I mentioned earlier, even writing has seemed to get more tiring and difficult to do. Even writing this blog I am sitting here...thinking...trying to remember what else I wanted to mention...if I remember at all. I know I'm a slow typist, but what I've done so far has taken me...45 minutes. Mostly because I'm sitting here trying to think of what to type next. (Redundant, I know...)
As the weather here has gotten colder, so has my internal body temp...my feet especially. The other night I had three quilts on me, plus a fleece blanket, and I was freezing! After about an hour my upper body had finally warmed, but my feet felt like Popsicles. I was eventually able to fall asleep in spite of my cold feet; but then slept fitfully.
The ammonia smell has been constant. It has gotten so intense that others, when with me in a small room or a car, are able to smell the ammonia, too! Nasty!
And...that's all. I'm exhausted. I've been feeling exhausted for a number of days now. No matter how much sleep I get, most of the time I am sleepy like I didn't rest at all.
Good Health to All!
ScottW
On Wednesday I awoke feeling somewhat refreshed, the headache was tolerable, the nausea not overly intense, and the vertigo somewhat reduced. It stayed like that until the evening when the nausea and headache ramped up. But, it was a definite break...and I'll take that.
It seems like my year+ headache has elevated to a new average level. For the past week it has been averaging at about an 8; and there have been multiple spikes to the 9.5-10 range; though nothing sustained at that level. I had one of those spike late last night. The headache literally went from average to a 10 within minutes. I wasn't doing anything to precipitate the spike--it just happened. After taking a T3, I immediately lay down, closed my eyes, and just waited. After 30 minutes it (the headache) had not subsided, so I took another T3. Thirty minutes after that, the excruciating pain was gone, and it was once again tolerable.
As you have been able to see, I'm having a difficult time writing my blog with any consistency. Remembering has been the biggest problem. I can be doing something and think, "I need to catch up on my blog." Within seconds I have completely forgotten that thought and go on to other things.
Also, writing is getting more difficult. As I [believe] I mentioned earlier, even writing has seemed to get more tiring and difficult to do. Even writing this blog I am sitting here...thinking...trying to remember what else I wanted to mention...if I remember at all. I know I'm a slow typist, but what I've done so far has taken me...45 minutes. Mostly because I'm sitting here trying to think of what to type next. (Redundant, I know...)
As the weather here has gotten colder, so has my internal body temp...my feet especially. The other night I had three quilts on me, plus a fleece blanket, and I was freezing! After about an hour my upper body had finally warmed, but my feet felt like Popsicles. I was eventually able to fall asleep in spite of my cold feet; but then slept fitfully.
The ammonia smell has been constant. It has gotten so intense that others, when with me in a small room or a car, are able to smell the ammonia, too! Nasty!
And...that's all. I'm exhausted. I've been feeling exhausted for a number of days now. No matter how much sleep I get, most of the time I am sleepy like I didn't rest at all.
Good Health to All!
ScottW
Monday, November 8, 2010
07 Nov. 2010
Consistently...More of the same.
Friday I had to be up early to do errands. In total, I rode about 40 miles in a car. About halfway through the errands i began to get nauseated, and it gradually intensified. As it did, the vertigo got completely out of control. Even closing my eyes was completely ineffective towards reducing the dizziness. About the same time, my headache also kicked into high gear, shooting almost instantly from a 7 to a 9.5. Before I got home I was doubled over in nausea, and had to be helped inside. I took a full dose of Promethazine and immediately laid down.
Within about twenty minutes the nausea subsided somewhat, and I then turned to alleviating the headache. For only the second time, I took two T3's at the same time. An hour later, after having had a little food (and the headache retreating), I was asleep. When I awoke six hours later, the headache had gone down to an 8, and the nausea was now merely intense.
The vertigo continued all evening at nearly the same level as earlier, so I lay and sat around a lot. I ate very little for the rest of the "day," and had to take more anti-emetic and T3 to keep the symptoms in check.
Saturday was better; but not much. The only real difference the whole day was that the nausea never intensified as it had the previous day. The rest of my symptomology was present throughout including increased edema in my legs. I ate all of a whopping cup and a half of food, plus only about 48 oz of liquids.
Today was better, but by no means even a good day. While the nausea has been decreased, the headache has not; running at about an 8.5 all day. The vertigo has been better, but was still affecting everything I did. I think I had my hands on walls, counters, etc today more than I have at any other time. My appetite continues to be abysmal. The liquid intake, too. And in spite of limited liquids, the edema is increased today. Plus, I noticed this afternoon that the skin on my feet is drying out. I'll treat this with the same lotion I'm using on my chin.
Finally, this evening I began to get that really blah feeling coming over my body. I've been feeling exhausted all day, and it doesn't seem to be letting up at all. We'll see if it affects me tomorrow as well.
In spite of all of this, I am still getting at least some housework done every day; though the amount is reduced from what I was doing just one month ago. This is also true of my work on the computer. I'm rarely doing my other blogs; and doing research feels overwhelming, instead of exciting like it used to be. Where before the disease onset I'd be like, "More information! More studying!"; now it's more like, "I can't process anything." This is very frustrating for me.
But, I strive every day to keep my mind positive and forward-thinking. My subconscious seems to be back on track with sorting everything out. I am in control of everything in my dreams once again. Also, I have zero thoughts of self-pity, remorse, distress, etc. Going there would only enslave me to the dark, depressing thoughts that I clearly want to avoid. This whole thing is just something I have to endure and come out the other side a better person than when it all started. I've already learned so much about myself (and others); but I still have so much more to learn. So, Positivity is the word of the year!
Let's have a great week!
Good Health to All!
ScottW
Ps-Because of the intensifying of all of my symptoms, I have decided against traveling for my dad's funeral. After what happened following just an hour and a half in the car, I just don't want to risk the consequences extended travel would subject my body to.
Friday I had to be up early to do errands. In total, I rode about 40 miles in a car. About halfway through the errands i began to get nauseated, and it gradually intensified. As it did, the vertigo got completely out of control. Even closing my eyes was completely ineffective towards reducing the dizziness. About the same time, my headache also kicked into high gear, shooting almost instantly from a 7 to a 9.5. Before I got home I was doubled over in nausea, and had to be helped inside. I took a full dose of Promethazine and immediately laid down.
Within about twenty minutes the nausea subsided somewhat, and I then turned to alleviating the headache. For only the second time, I took two T3's at the same time. An hour later, after having had a little food (and the headache retreating), I was asleep. When I awoke six hours later, the headache had gone down to an 8, and the nausea was now merely intense.
The vertigo continued all evening at nearly the same level as earlier, so I lay and sat around a lot. I ate very little for the rest of the "day," and had to take more anti-emetic and T3 to keep the symptoms in check.
Saturday was better; but not much. The only real difference the whole day was that the nausea never intensified as it had the previous day. The rest of my symptomology was present throughout including increased edema in my legs. I ate all of a whopping cup and a half of food, plus only about 48 oz of liquids.
Today was better, but by no means even a good day. While the nausea has been decreased, the headache has not; running at about an 8.5 all day. The vertigo has been better, but was still affecting everything I did. I think I had my hands on walls, counters, etc today more than I have at any other time. My appetite continues to be abysmal. The liquid intake, too. And in spite of limited liquids, the edema is increased today. Plus, I noticed this afternoon that the skin on my feet is drying out. I'll treat this with the same lotion I'm using on my chin.
Finally, this evening I began to get that really blah feeling coming over my body. I've been feeling exhausted all day, and it doesn't seem to be letting up at all. We'll see if it affects me tomorrow as well.
In spite of all of this, I am still getting at least some housework done every day; though the amount is reduced from what I was doing just one month ago. This is also true of my work on the computer. I'm rarely doing my other blogs; and doing research feels overwhelming, instead of exciting like it used to be. Where before the disease onset I'd be like, "More information! More studying!"; now it's more like, "I can't process anything." This is very frustrating for me.
But, I strive every day to keep my mind positive and forward-thinking. My subconscious seems to be back on track with sorting everything out. I am in control of everything in my dreams once again. Also, I have zero thoughts of self-pity, remorse, distress, etc. Going there would only enslave me to the dark, depressing thoughts that I clearly want to avoid. This whole thing is just something I have to endure and come out the other side a better person than when it all started. I've already learned so much about myself (and others); but I still have so much more to learn. So, Positivity is the word of the year!
Let's have a great week!
Good Health to All!
ScottW
Ps-Because of the intensifying of all of my symptoms, I have decided against traveling for my dad's funeral. After what happened following just an hour and a half in the car, I just don't want to risk the consequences extended travel would subject my body to.
Friday, November 5, 2010
05 Nov. 2010
Remember how I was telling you about how tired I have been? Well, Wednesday I got caught up on some sleep.
Remember too, that I had a huge bout of nausea roll over me as I was writing my last blog entry. I had to take a half dose of Promethazine in order to keep it in check. Anyway, in spite of having the anti-emetic in me, I still had a difficult time getting to sleep. Once I did, my dreams (and my sleeping) were restless and I awoke after seven hours simply exhausted.
The nausea continued to make me miserable all day. By 630p I'd had enough and took a dose of the anti-emetic once again. It calmed my stomach down, and put me to sleep by 730p. I stayed there until midnight, then was awake for another five hours before falling asleep for another seven.
By the time I woke up today, I'd had a total of 18.5 hours of sleep over the previous 31 hours. This time, I actually felt somewhat rested for the first time in weeks. It's a nice change of pace; however short-lived it may be.
That's all I wanted to share today.
Good Health to All!
ScottW
Remember too, that I had a huge bout of nausea roll over me as I was writing my last blog entry. I had to take a half dose of Promethazine in order to keep it in check. Anyway, in spite of having the anti-emetic in me, I still had a difficult time getting to sleep. Once I did, my dreams (and my sleeping) were restless and I awoke after seven hours simply exhausted.
The nausea continued to make me miserable all day. By 630p I'd had enough and took a dose of the anti-emetic once again. It calmed my stomach down, and put me to sleep by 730p. I stayed there until midnight, then was awake for another five hours before falling asleep for another seven.
By the time I woke up today, I'd had a total of 18.5 hours of sleep over the previous 31 hours. This time, I actually felt somewhat rested for the first time in weeks. It's a nice change of pace; however short-lived it may be.
That's all I wanted to share today.
Good Health to All!
ScottW
Wednesday, November 3, 2010
A Very Personal Note
I just learned that my father died this morning at
approximately 0200a Central time.
His death was not unexpected due to having contracted prostate cancer,
as well as being burdened with advanced Alzheimer's disease.
Jerome Beryl W, a 3rd generation Swedish American;
Born 05 Aug. 1932 in Bertha, Minnesota.
He was a great father; my hiking companion; my friend. He taught me responsibility, thrift, an indomitable work ethic, strength of purpose,
photography, and a great love of the outdoors.
He also taught me that nothing is impossible so long as you believe,
pursue, and effort your very best at all times.
He was a father of six, a grandfather of eleven, and a great grandfather of eight.
He now joins my mother who herself died on 14 Feb. 2001.
05 Aug. 1932 - 03 Nov. 2010 (Age 78)
approximately 0200a Central time.
His death was not unexpected due to having contracted prostate cancer,
as well as being burdened with advanced Alzheimer's disease.
Jerome Beryl W, a 3rd generation Swedish American;
Born 05 Aug. 1932 in Bertha, Minnesota.
He was a great father; my hiking companion; my friend. He taught me responsibility, thrift, an indomitable work ethic, strength of purpose,
photography, and a great love of the outdoors.
He also taught me that nothing is impossible so long as you believe,
pursue, and effort your very best at all times.
He was a father of six, a grandfather of eleven, and a great grandfather of eight.
He now joins my mother who herself died on 14 Feb. 2001.
05 Aug. 1932 - 03 Nov. 2010 (Age 78)
Tuesday, November 2, 2010
02 Nov. 2010
I really wish I had better news.
But, that will remain only a wish.
Over Saturday, Sunday and Monday I ended up taking a total of 8 half-doses of the anti-emetic Promethazine. The nausea was, nearly uncontrollable. Only by keeping it active in my body was I able to maintain what little control I had. Yesterday (Monday) was better; and today I have not taken any. Not that I've been without nausea--no, no, no! I've had plenty of that!--it has just been kept in relative check, and I've not had a single instance of intense nausea today. (Yay! Small victories...I'll take 'em!)
As has been the pattern, with the sustained increase of my nausea came a sustained increase in the intensity of my now one year long headache. Over the weekend (and up to today), it has averaged a stellar 8.5, with occasional spikes that were 9.5+. For the first time (I believe) I had to take a single dose of T3 every four hours for two days. Monday I only took three in total; and Tuesday, I had just one. Again, small victories.
All weekend the vertigo has been ridiculous. It has been nearly constant. I'm talking laying, sitting, standing, walking. No matter what I've been doing, it has been making me unstable on my feet, and increasing my nausea when I'm sitting or laying.
My appetite since Friday has been completely below average. I just don't want to eat. Considering the nausea, the headache and the vertigo, I'm really not at all surprised by this. Even my liquid consumption has decreased.
My eyesight has been exceptionally blurry in the middle of all of this. So bad, in fact, that my reading glasses cannot completely compensate as they have been able to do up til now.
Then today (Tuesday), I had my first occurrence of mis-dosing. I'd had a bout of diarrhea, and went to retrieve the Immodium. I opened a bottle, took the med, then suddenly realized that I had taken Zantac instead--which, I now cannot take tonight as only two doses per day are permitted. Upon realizing my mistake, I retrieved (and took) the correct med. I don't know why it happened. In reaching for the med my mind simply didn't register that I was grabbing the wrong med. I don't know how to guarantee against a repeat of this. If I take the wrong med and it's a bad error, I could very well place my health in danger. I have to figure this one out.
The incidents of my recall and short-term memory loss seem to be increasing. I'm having a difficult time remembering facts, names, dates, and even how to do simple tasks like setting the controls on the microwave. That one happened tonight. I went to warm something up, set it inside the microwave, closed the door, then just went blank and stared at the controls for about ten seconds. My brain finally snapped into place and I set the controls just fine. This isn't the first time things like this have happened.
On top of everything, I have been sleeping poorly, at best. I get about seven hours per day; but I wake multiple times, I have nearly uncontrollable disturbing dreams (my subconscious trying to sort things out, no doubt), and I awaken each day feeling exhausted--as if I didn't get to sleep at all.
On the plus side, the edema is down slightly. It has been for at least two days.
Also, I've found a temporary solution for the dry skin on my face. I had to shave my beard to mere stubble :o( in order to apply a non-paraffin based skin moisturizer to my chin, and around my mouth. I apply it twice a day. It works for about a week before becoming ineffective. So, I give my skin a break for a few days, then shave my beard and do it all over again. This is not a viable solution for my scalp simply because I am completely unwilling to shave my head. I'm looking for other shampoo-type products which might help.
(I just took a half dose of the anti-emetic. Intense nausea hit me about two minutes ago. I had NOT been nauseated this much all day; and it just came on like gangbusters.)
So, with the nausea onset, I'll wrap up this entry.
I hope that everyone reading this is in good health, great spirits, and moving towards great things in their lives. Keep going!
Good Health to All!
ScottW
But, that will remain only a wish.
Over Saturday, Sunday and Monday I ended up taking a total of 8 half-doses of the anti-emetic Promethazine. The nausea was, nearly uncontrollable. Only by keeping it active in my body was I able to maintain what little control I had. Yesterday (Monday) was better; and today I have not taken any. Not that I've been without nausea--no, no, no! I've had plenty of that!--it has just been kept in relative check, and I've not had a single instance of intense nausea today. (Yay! Small victories...I'll take 'em!)
As has been the pattern, with the sustained increase of my nausea came a sustained increase in the intensity of my now one year long headache. Over the weekend (and up to today), it has averaged a stellar 8.5, with occasional spikes that were 9.5+. For the first time (I believe) I had to take a single dose of T3 every four hours for two days. Monday I only took three in total; and Tuesday, I had just one. Again, small victories.
All weekend the vertigo has been ridiculous. It has been nearly constant. I'm talking laying, sitting, standing, walking. No matter what I've been doing, it has been making me unstable on my feet, and increasing my nausea when I'm sitting or laying.
My appetite since Friday has been completely below average. I just don't want to eat. Considering the nausea, the headache and the vertigo, I'm really not at all surprised by this. Even my liquid consumption has decreased.
My eyesight has been exceptionally blurry in the middle of all of this. So bad, in fact, that my reading glasses cannot completely compensate as they have been able to do up til now.
Then today (Tuesday), I had my first occurrence of mis-dosing. I'd had a bout of diarrhea, and went to retrieve the Immodium. I opened a bottle, took the med, then suddenly realized that I had taken Zantac instead--which, I now cannot take tonight as only two doses per day are permitted. Upon realizing my mistake, I retrieved (and took) the correct med. I don't know why it happened. In reaching for the med my mind simply didn't register that I was grabbing the wrong med. I don't know how to guarantee against a repeat of this. If I take the wrong med and it's a bad error, I could very well place my health in danger. I have to figure this one out.
The incidents of my recall and short-term memory loss seem to be increasing. I'm having a difficult time remembering facts, names, dates, and even how to do simple tasks like setting the controls on the microwave. That one happened tonight. I went to warm something up, set it inside the microwave, closed the door, then just went blank and stared at the controls for about ten seconds. My brain finally snapped into place and I set the controls just fine. This isn't the first time things like this have happened.
On top of everything, I have been sleeping poorly, at best. I get about seven hours per day; but I wake multiple times, I have nearly uncontrollable disturbing dreams (my subconscious trying to sort things out, no doubt), and I awaken each day feeling exhausted--as if I didn't get to sleep at all.
On the plus side, the edema is down slightly. It has been for at least two days.
Also, I've found a temporary solution for the dry skin on my face. I had to shave my beard to mere stubble :o( in order to apply a non-paraffin based skin moisturizer to my chin, and around my mouth. I apply it twice a day. It works for about a week before becoming ineffective. So, I give my skin a break for a few days, then shave my beard and do it all over again. This is not a viable solution for my scalp simply because I am completely unwilling to shave my head. I'm looking for other shampoo-type products which might help.
(I just took a half dose of the anti-emetic. Intense nausea hit me about two minutes ago. I had NOT been nauseated this much all day; and it just came on like gangbusters.)
So, with the nausea onset, I'll wrap up this entry.
I hope that everyone reading this is in good health, great spirits, and moving towards great things in their lives. Keep going!
Good Health to All!
ScottW
Friday, October 29, 2010
29 Oct. 2010
No let up in the day to day.
In fact, the last day and a half have been worse than how I've been feeling the past few weeks. Tuesday I was feeling really blah all day. I went out to help with errands that evening, and in the middle of grocery shopping, I became overwhelmingly nauseated. It literally hit me within just a very few minutes. It didn't let up all evening, and I ended up taking a full dose of the anti-emetic.
I slept only fitfully, and upon awaking, felt as if I hadn't taken any meds at all [for the nausea]. Within about thirty minutes I took a half dose of Promethazine, as well as a T3 for my raging headache. I ate nothing until 830p simply because I was feeling terrible all day. Additionally, my whole body is feeling more blah than ever, and I've had numerous body aches. Plus, I had 5 bouts of diarrhea yesterday. On top of everything, I slept an additional two hours after being awake for just three hours. On waking, the nausea was still intense, and my headache was awful. (NOT a good day!)
As of this writing (at 0544a on Friday, 29 Oct.), I am still awake because of how I'm feeling. I've been tired now for about three hours, but cannot sleep. Enough time has now passed that I can safely take another dose of Promethazine, and of T3. A little relief (and sleep) will be very welcomed!
I know my entry today doesn't sound up at all; but that's OK. I've had a really tough few days, and I'm still feeling terrible as I get close to going back to sleep. Hopefully, more rest will help everything to settle down.
So, that's all for now. I will hopefully have a better report, and be better sounding on my next entry.
Good Health to All!
ScottW
In fact, the last day and a half have been worse than how I've been feeling the past few weeks. Tuesday I was feeling really blah all day. I went out to help with errands that evening, and in the middle of grocery shopping, I became overwhelmingly nauseated. It literally hit me within just a very few minutes. It didn't let up all evening, and I ended up taking a full dose of the anti-emetic.
I slept only fitfully, and upon awaking, felt as if I hadn't taken any meds at all [for the nausea]. Within about thirty minutes I took a half dose of Promethazine, as well as a T3 for my raging headache. I ate nothing until 830p simply because I was feeling terrible all day. Additionally, my whole body is feeling more blah than ever, and I've had numerous body aches. Plus, I had 5 bouts of diarrhea yesterday. On top of everything, I slept an additional two hours after being awake for just three hours. On waking, the nausea was still intense, and my headache was awful. (NOT a good day!)
As of this writing (at 0544a on Friday, 29 Oct.), I am still awake because of how I'm feeling. I've been tired now for about three hours, but cannot sleep. Enough time has now passed that I can safely take another dose of Promethazine, and of T3. A little relief (and sleep) will be very welcomed!
I know my entry today doesn't sound up at all; but that's OK. I've had a really tough few days, and I'm still feeling terrible as I get close to going back to sleep. Hopefully, more rest will help everything to settle down.
So, that's all for now. I will hopefully have a better report, and be better sounding on my next entry.
Good Health to All!
ScottW
Monday, October 25, 2010
25 Oct. 2010
Signs and symptoms continue to be rough.
I've been meaning to write on this blog for several days, but I just haven't felt up to it. Over the past number of days all of the S/S's I've been experiencing have been constant 24/7. It didn't help that I went to a college football game on Saturday, but I couldn't pass up free tickets and a chance to see a family friend lead the home team to victory! (Gosh!)
Instead of listing the individual days today, I'll just go over the S/S's...
-The nausea has been terrible. It has been seeming like I cannot eat, drink or go hungry without setting off intense nausea. For the most part I can control it--and I mean that in a very loose sense of the word. Most of the time I am only able to stop the nausea from becoming overwhelming.However, my efforts are not always successful. In the past five days I've had to use the prescription anti-emetic four times.
-My headache continues on unceasingly. Nearly a year has passed since it started. The last week has been really rough with a constant headache of 7.5-8.5. I even had it intensify for a full day to a 10. Not fun!
-Edema has been consistent. It is clearly visible in my feet, lower legs, and hands. There has been no increase in the overall swelling, and my feet and legs have not been itching (which would be signaling increased edema).
-My appetite has gone from poor to next to nothing. Over the last week I've eaten above average just once, and below average 3-4 times. My intake of water has been really bad. I am rarely thirsty, so I forget to drink anything.
-Incidents of diarrhea seem to have increased slightly. At this point it is not a pattern; but I am certainly paying attention to this. Luckily, this has not become unmanageable. I can usually control it with a single dose of Imodium.
-The blurry vision has been constant. Some days it is worse; but for the most part, it's just constant.
-Incidents of vertigo and general dizziness continue unabated. These is no rhyme or reason for when it hits, so anticipating it is difficult. Whenever I am out of the house I always have my cane; and it has helped stop a number of falls over the past week.
-The general malaise that has been clinging to me also continues. My ability to do housework, write my blog, etc is all diminished. Just that lack of oomph to get me going on anything more than the have to's. It is frustrating; but I do my best every day in spite of this.
I think that's all. If I remember anything else, I'll either add it here, or do another blog entry.
Good Health to All!
ScottW
I've been meaning to write on this blog for several days, but I just haven't felt up to it. Over the past number of days all of the S/S's I've been experiencing have been constant 24/7. It didn't help that I went to a college football game on Saturday, but I couldn't pass up free tickets and a chance to see a family friend lead the home team to victory! (Gosh!)
Instead of listing the individual days today, I'll just go over the S/S's...
-The nausea has been terrible. It has been seeming like I cannot eat, drink or go hungry without setting off intense nausea. For the most part I can control it--and I mean that in a very loose sense of the word. Most of the time I am only able to stop the nausea from becoming overwhelming.However, my efforts are not always successful. In the past five days I've had to use the prescription anti-emetic four times.
-My headache continues on unceasingly. Nearly a year has passed since it started. The last week has been really rough with a constant headache of 7.5-8.5. I even had it intensify for a full day to a 10. Not fun!
-Edema has been consistent. It is clearly visible in my feet, lower legs, and hands. There has been no increase in the overall swelling, and my feet and legs have not been itching (which would be signaling increased edema).
-My appetite has gone from poor to next to nothing. Over the last week I've eaten above average just once, and below average 3-4 times. My intake of water has been really bad. I am rarely thirsty, so I forget to drink anything.
-Incidents of diarrhea seem to have increased slightly. At this point it is not a pattern; but I am certainly paying attention to this. Luckily, this has not become unmanageable. I can usually control it with a single dose of Imodium.
-The blurry vision has been constant. Some days it is worse; but for the most part, it's just constant.
-Incidents of vertigo and general dizziness continue unabated. These is no rhyme or reason for when it hits, so anticipating it is difficult. Whenever I am out of the house I always have my cane; and it has helped stop a number of falls over the past week.
-The general malaise that has been clinging to me also continues. My ability to do housework, write my blog, etc is all diminished. Just that lack of oomph to get me going on anything more than the have to's. It is frustrating; but I do my best every day in spite of this.
I think that's all. If I remember anything else, I'll either add it here, or do another blog entry.
Good Health to All!
ScottW
Article: Considering Living Kidney Donation
I received the following article in my email from The Transplant Experience, a public service arm of Astellas Pharm USA Inc. Their goal is not just self promotion; but to educate transplant patients about the confusing and extremely overwhelming information regarding transplants, lifestyles and the pharmaceuticals involved. They have great information, and I encourage you to visit their website at www.astellastransplant.com or at www.transplantexperience.com.
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Thursday, October 21, 2010
21 Oct. 2010
Well, my mind is in a better place.
It didn't actually take long to get back there. So, on with today's entry.
The few days preceding my last appointment were almost exactly the same as the previous few weeks. Not much variation, really.
Tuesday was a very bad day. I awoke with both headache and nausea; both of which intensified as the day wore on. I ate next to nothing all day. (That's not and exaggeration!) My headache grew to a steady 9.5 all afternoon. For the first time I took two T3's at once. These only made my headache tolerable. After the headache was taken care of I had to address the nausea.
All of my non-prescription attempts to control the nausea were to no avail. I had to take a half dose of the anti-emetic (Promethazine). It alleviated the symptoms only slightly, so I ended up taking another half dose, which finally worked. I then proceeded to literally lay around all day because of the side effects of both meds.Before bed, I had to take another half dose of the anti-emetic. The headache, though not gone, was at least controllable with a single T3.
Wednesday morning was better. The nausea was decreased and controllable, my headache was tolerable, and even though I felt terrible, it was an improvement over the previous day. However, as is becoming the pattern, as the day wore on, my symptomology increased. Aside from several bouts of diarrhea, I was able to keep everything in check, which was nice, but I could not get comfortable all day. I didn't eat until 930p [because I just didn't feel like it], and actually felt OK after I finished.
The only other thing that happened was the continued insomnia. I didn't even feel tired until 1030a today (!), then slept just five hours; and now, am feeling exhausted.
I can't remember if I ever mentioned that a number of advanced PCKD patients report insomnia. I have no clue as to the pathophysiology involved; I just know that a regularly reported symptom (amongst the advanced PCKD patients) is insomnia. It might be the meds, the disease itself, or a combination of the two. Again, I just don't know the why of it. So, if you have late stage PCKD and find you can't sleep, don't be surprised by this. Also, I don't know that all patients experience insomnia, but enough do that it is mentioned in all the literature I have read.
Other than that, I believe the only things I failed to mention about the last few days was that I am cold, and bundled up literally all day; my smelling extremely strong ammonia is still ever-present; my vision is blurry--even with my reading glasses*; and the vertigo and general dizziness are constantly getting in the way. It's nothing but one gigantic party day after another! :o)
That's all I've got for now.
Good Health to All!
ScottW
*My reading glasses are not for vision. My eye sight is normally just fine. However, I was diagnosed about ten years ago with Ocular Divergence. This is, very simply, that the muscles surrounding the eyes cannot keep the eyeballs in line when I read. In other words, instead of staying straight as I look on a page (while reading), the eyes diverge slightly causing the muscles to ache. My reading glasses just help keep my eyes looking straight, thereby relaxing and strengthening the eye muscles.
It didn't actually take long to get back there. So, on with today's entry.
The few days preceding my last appointment were almost exactly the same as the previous few weeks. Not much variation, really.
Tuesday was a very bad day. I awoke with both headache and nausea; both of which intensified as the day wore on. I ate next to nothing all day. (That's not and exaggeration!) My headache grew to a steady 9.5 all afternoon. For the first time I took two T3's at once. These only made my headache tolerable. After the headache was taken care of I had to address the nausea.
All of my non-prescription attempts to control the nausea were to no avail. I had to take a half dose of the anti-emetic (Promethazine). It alleviated the symptoms only slightly, so I ended up taking another half dose, which finally worked. I then proceeded to literally lay around all day because of the side effects of both meds.Before bed, I had to take another half dose of the anti-emetic. The headache, though not gone, was at least controllable with a single T3.
Wednesday morning was better. The nausea was decreased and controllable, my headache was tolerable, and even though I felt terrible, it was an improvement over the previous day. However, as is becoming the pattern, as the day wore on, my symptomology increased. Aside from several bouts of diarrhea, I was able to keep everything in check, which was nice, but I could not get comfortable all day. I didn't eat until 930p [because I just didn't feel like it], and actually felt OK after I finished.
The only other thing that happened was the continued insomnia. I didn't even feel tired until 1030a today (!), then slept just five hours; and now, am feeling exhausted.
I can't remember if I ever mentioned that a number of advanced PCKD patients report insomnia. I have no clue as to the pathophysiology involved; I just know that a regularly reported symptom (amongst the advanced PCKD patients) is insomnia. It might be the meds, the disease itself, or a combination of the two. Again, I just don't know the why of it. So, if you have late stage PCKD and find you can't sleep, don't be surprised by this. Also, I don't know that all patients experience insomnia, but enough do that it is mentioned in all the literature I have read.
Other than that, I believe the only things I failed to mention about the last few days was that I am cold, and bundled up literally all day; my smelling extremely strong ammonia is still ever-present; my vision is blurry--even with my reading glasses*; and the vertigo and general dizziness are constantly getting in the way. It's nothing but one gigantic party day after another! :o)
That's all I've got for now.
Good Health to All!
ScottW
*My reading glasses are not for vision. My eye sight is normally just fine. However, I was diagnosed about ten years ago with Ocular Divergence. This is, very simply, that the muscles surrounding the eyes cannot keep the eyeballs in line when I read. In other words, instead of staying straight as I look on a page (while reading), the eyes diverge slightly causing the muscles to ache. My reading glasses just help keep my eyes looking straight, thereby relaxing and strengthening the eye muscles.
Monday, October 18, 2010
18 Oct. 2010
The latest news...
In spite of feeling absolutely terrible, my latest Glomelular Filtration Rate (GFR)/Kidney Function has actually bounced upwards to 22.2%...which technically puts me out of End Stage...for now. My nephrologist stated that it is not unusual to see bounces like this. He also stated that I could very well go right back down to Stage 5.
The other news:
-The blood in my urine is at 172 mg/dl (severe is 1000+ mg/dl) and is essentially unchanged; though the protein wastes are increased over last visit (don't know numbers).
-Particulates in the urine are increased.
-RBC production continues to be anemic at 37% hematocrit (unchanged).
-BUN is 40.0 (5-26 normal)
-Serum Creatinine is 3.2 (0.5-1.5 normal)
-A number of blood components are on the high end of the scale (meaning they are not being filtered out).
-Other blood wastes are on the high end of the scale.
-My blood glucose is at 95 (65-109).
-Parathyroid Hormone is good, though near the top end of the normal scale.
So, what does all of this mean?
Well, I am still in a holding pattern. Though I am not declining, my doctor is very concerned with how I've been feeling. He could not give me an indication about what might happen over the next few months. I could stay the same, decline a little, or crash suddenly. It really comes down to what my body is going to do; and there is no way to know just what that is. We simply have to wait and see.
The good news is that I am still only dealing with PCKD. No diabetic development; no liver impairment; no signs of CVA, AMI, Pulmonary Edema, etc.
I must admit that I'm a bit bummed that, after feeling so lousy for so long, I am no closer to real adjunctive treatment than I was four months ago. On the other hand, it is what it is; and now I have to eliminate the self-pity and concentrate on holding steady as my body gets itself sorted as to what it's going to do.
(Deep breath....)
So, on we go. My next appointment is in six weeks (30 Nov). Until then, I will continue on from day to day, doing the very best that I can. Things will continue to be tough; but there's no sense to giving in to discouragement and despair. Doing so will only make what I'm having to go through even harder than it already is. Besides, like I've already stated, giving up is just not in the cards; it's not who or what I am, and I cannot even consider it [from a rational point of view].
So... Positivity, Strength, Patience, Endurance, Faith.
For me, those are the keys to being and doing my best every day.
Thank you for continuing with me on this journey.
Good Health to All.
ScottW
In spite of feeling absolutely terrible, my latest Glomelular Filtration Rate (GFR)/Kidney Function has actually bounced upwards to 22.2%...which technically puts me out of End Stage...for now. My nephrologist stated that it is not unusual to see bounces like this. He also stated that I could very well go right back down to Stage 5.
The other news:
-The blood in my urine is at 172 mg/dl (severe is 1000+ mg/dl) and is essentially unchanged; though the protein wastes are increased over last visit (don't know numbers).
-Particulates in the urine are increased.
-RBC production continues to be anemic at 37% hematocrit (unchanged).
-BUN is 40.0 (5-26 normal)
-Serum Creatinine is 3.2 (0.5-1.5 normal)
-A number of blood components are on the high end of the scale (meaning they are not being filtered out).
-Other blood wastes are on the high end of the scale.
-My blood glucose is at 95 (65-109).
-Parathyroid Hormone is good, though near the top end of the normal scale.
So, what does all of this mean?
Well, I am still in a holding pattern. Though I am not declining, my doctor is very concerned with how I've been feeling. He could not give me an indication about what might happen over the next few months. I could stay the same, decline a little, or crash suddenly. It really comes down to what my body is going to do; and there is no way to know just what that is. We simply have to wait and see.
The good news is that I am still only dealing with PCKD. No diabetic development; no liver impairment; no signs of CVA, AMI, Pulmonary Edema, etc.
I must admit that I'm a bit bummed that, after feeling so lousy for so long, I am no closer to real adjunctive treatment than I was four months ago. On the other hand, it is what it is; and now I have to eliminate the self-pity and concentrate on holding steady as my body gets itself sorted as to what it's going to do.
(Deep breath....)
So, on we go. My next appointment is in six weeks (30 Nov). Until then, I will continue on from day to day, doing the very best that I can. Things will continue to be tough; but there's no sense to giving in to discouragement and despair. Doing so will only make what I'm having to go through even harder than it already is. Besides, like I've already stated, giving up is just not in the cards; it's not who or what I am, and I cannot even consider it [from a rational point of view].
So... Positivity, Strength, Patience, Endurance, Faith.
For me, those are the keys to being and doing my best every day.
Thank you for continuing with me on this journey.
Good Health to All.
ScottW
Friday, October 15, 2010
14 Oct. 2010
More, More, More.
That's a good summation of the last two days.
I awoke Wednesday feeling a tad better; but this didn't last long. Before long, I was having lots of vertigo, and dealing with my nausea. It went downhill from there.
I had my blood drawn for my latest round of tests. All the usual, plus a urinalysis and a check of my parathyroid. I'll know the results on Monday afternoon. Be sure to look for an entry either Monday evening or Tuesday.
As Wednesday progressed my headache ramped up from a 7 to an 8.5; the nausea increased, and I was smelling ammonia extremely strong all day. I did eat a little more over the course of the day, totaling about 5 cups of food! It was a downright banner day!) After I went to bed the nausea just suddenly increased to overwhelming. When two tums failed to alleviate it, I quickly took a half dose of Promethazine (anti-emetic). It calmed my stomach down in about 15 minutes, then got me to sleep for 8+ hours.
I awoke groggy, as usual, but the side effects wore off fairly quickly (probably due to the length of time I was asleep).The rest of today has been pretty miserable. I've felt sick all day, my headache has been painful, and I have had zero energy. Additionally, I've been bundled up all day because of feeling extremely cold. It took over three hours wrapped in blankets to get me warm. Even under the blankets my feet and hands were cold to the touch.
On top of all of this, I've eaten less than two cups of food all day, and have had very little to drink since I got up. Just haven't had any appetite, nor have I been thirsty.
That's all I can remember that I wanted to write. I'm hoping, as always, that the next few days give me a little break. We'll certainly see!
Good Health to All!
ScottW
That's a good summation of the last two days.
I awoke Wednesday feeling a tad better; but this didn't last long. Before long, I was having lots of vertigo, and dealing with my nausea. It went downhill from there.
I had my blood drawn for my latest round of tests. All the usual, plus a urinalysis and a check of my parathyroid. I'll know the results on Monday afternoon. Be sure to look for an entry either Monday evening or Tuesday.
As Wednesday progressed my headache ramped up from a 7 to an 8.5; the nausea increased, and I was smelling ammonia extremely strong all day. I did eat a little more over the course of the day, totaling about 5 cups of food! It was a downright banner day!) After I went to bed the nausea just suddenly increased to overwhelming. When two tums failed to alleviate it, I quickly took a half dose of Promethazine (anti-emetic). It calmed my stomach down in about 15 minutes, then got me to sleep for 8+ hours.
I awoke groggy, as usual, but the side effects wore off fairly quickly (probably due to the length of time I was asleep).The rest of today has been pretty miserable. I've felt sick all day, my headache has been painful, and I have had zero energy. Additionally, I've been bundled up all day because of feeling extremely cold. It took over three hours wrapped in blankets to get me warm. Even under the blankets my feet and hands were cold to the touch.
On top of all of this, I've eaten less than two cups of food all day, and have had very little to drink since I got up. Just haven't had any appetite, nor have I been thirsty.
That's all I can remember that I wanted to write. I'm hoping, as always, that the next few days give me a little break. We'll certainly see!
Good Health to All!
ScottW
Tuesday, October 12, 2010
Reminder To My Readers
As I do occasionally, I want to remind my readers that everything I write here regarding my ongoing struggle with polycystic kidney disease is my singular experience.
It is in no way indicative of the typical PCKD patient.
As with any disease, the way a person's body reacts to disease advancement, medication side effects, etc. is a wholly individual experience, and cannot be quantitatively measured for any sort of "normal" progression.
Finding another PCKD patient of my same age, gender, general health, and disease progression, they might have a completely different experience; or feel as if there is nothing wrong with them.
I am only writing what I go through on a day to day basis. It is purely my personal observations and experience.
As with any medical condition, it is always best to consult (often) with your personal medical professional regarding your signs and symptoms (S/S's), and all the various aspects surrounding your experience.
It is in no way indicative of the typical PCKD patient.
As with any disease, the way a person's body reacts to disease advancement, medication side effects, etc. is a wholly individual experience, and cannot be quantitatively measured for any sort of "normal" progression.
Finding another PCKD patient of my same age, gender, general health, and disease progression, they might have a completely different experience; or feel as if there is nothing wrong with them.
I am only writing what I go through on a day to day basis. It is purely my personal observations and experience.
As with any medical condition, it is always best to consult (often) with your personal medical professional regarding your signs and symptoms (S/S's), and all the various aspects surrounding your experience.
Monday, October 11, 2010
11 Oct. 2010
Another rough span of days.
Since that day a week or so ago I haven't had a single day of feeling even "good." Is this a new [low] level of normal? Time will certainly answer that.
My sleep has been increasingly restless. My mind may be trying to deal with my health on the subconscious level...I just don't know. I've now been feeling bad for a whole year, so I'm sure there is some stress my mind is trying to compensate for, or fix. What I do know is that I am awaking every day as tired as if I never went to sleep; and that I am having dozens of instances of partially waking every time I sleep, and feeling like I've had bad dreams. Strange.
Saturday was only slightly better than Friday. I ate a little more, though...which was nice. All day I still had to contend with the vertigo and general dizziness, a headache of an 8, visibly increased edema in my lower legs, the ongoing malaise, and a decreased urinary output (in spite of using the diuretic--as always). I got next to nothing accomplished and just felt like a lump all day.
Sunday was downright terrible. I slept for all of 90 minutes before being awoken by a headache that rated somewhere in the 9-9.5 range. It stayed at that level until later that night. Meds did little but make it back off to about an 8. Plus, my newly increased nausea was kicking my butt as well. I didn't eat anything until 830p. In total, I ate about two cups of food for the whole day.
In spite of being as tired as I was, I could not get back to sleep. I finally accomplished that around 930p; but only slept for four hours before being awoken (again!) by the headache. It was at a 9, again, and making me miserable. So, it was more meds, and more sleeplessness. Plus, about an hour after I took the meds, I got overwhelmingly nauseated within seconds. No reason...it just happened. So, I took the anti-emetic. Within ten minutes it had alleviated the nausea, but did little to help me get back to sleep until 630a. Then, I slept [restlessly] until 230p. Even after all that sleep, I am still tired and feel as if I could sleep even more.
However, as of this writing, the nausea has backed off (yay!), and the headache, too (yay!). My whole abdomen feels off like I've got the flu (you know...tender, slightly crampy, and just off). I've been up for 2.5 hours and have yet to eat anything, and really don't feel like eating at all. Looking at my feet today I see the edema has not decreased, and I'm even seeing a little swelling in my hands. It's not a lot, but it is definitely present.
Also, I trimmed my beard really short to see what my skin is looking like [because of the dry skin I've been having on my face and scalp]. I've got numerous patches of this dry skin on my chin, around my nose and along the jaw line.This is all in addition to the scalp dryness that started four or five months ago. I'm pretty sure the dryness is from all the meds I'm taking. Remember, I started having the dry scalp around the time my hair became inexplicably straight. (I'm just glad I'm not losing any hair!) Anyway, I'll probably shave my beard entirely to see if I can treat the dry patches. Hopefully I can.
That's all I wanted to mention today...I think...as always! :o)
Good Health to All!
ScottW
Since that day a week or so ago I haven't had a single day of feeling even "good." Is this a new [low] level of normal? Time will certainly answer that.
My sleep has been increasingly restless. My mind may be trying to deal with my health on the subconscious level...I just don't know. I've now been feeling bad for a whole year, so I'm sure there is some stress my mind is trying to compensate for, or fix. What I do know is that I am awaking every day as tired as if I never went to sleep; and that I am having dozens of instances of partially waking every time I sleep, and feeling like I've had bad dreams. Strange.
Saturday was only slightly better than Friday. I ate a little more, though...which was nice. All day I still had to contend with the vertigo and general dizziness, a headache of an 8, visibly increased edema in my lower legs, the ongoing malaise, and a decreased urinary output (in spite of using the diuretic--as always). I got next to nothing accomplished and just felt like a lump all day.
Sunday was downright terrible. I slept for all of 90 minutes before being awoken by a headache that rated somewhere in the 9-9.5 range. It stayed at that level until later that night. Meds did little but make it back off to about an 8. Plus, my newly increased nausea was kicking my butt as well. I didn't eat anything until 830p. In total, I ate about two cups of food for the whole day.
In spite of being as tired as I was, I could not get back to sleep. I finally accomplished that around 930p; but only slept for four hours before being awoken (again!) by the headache. It was at a 9, again, and making me miserable. So, it was more meds, and more sleeplessness. Plus, about an hour after I took the meds, I got overwhelmingly nauseated within seconds. No reason...it just happened. So, I took the anti-emetic. Within ten minutes it had alleviated the nausea, but did little to help me get back to sleep until 630a. Then, I slept [restlessly] until 230p. Even after all that sleep, I am still tired and feel as if I could sleep even more.
However, as of this writing, the nausea has backed off (yay!), and the headache, too (yay!). My whole abdomen feels off like I've got the flu (you know...tender, slightly crampy, and just off). I've been up for 2.5 hours and have yet to eat anything, and really don't feel like eating at all. Looking at my feet today I see the edema has not decreased, and I'm even seeing a little swelling in my hands. It's not a lot, but it is definitely present.
Also, I trimmed my beard really short to see what my skin is looking like [because of the dry skin I've been having on my face and scalp]. I've got numerous patches of this dry skin on my chin, around my nose and along the jaw line.This is all in addition to the scalp dryness that started four or five months ago. I'm pretty sure the dryness is from all the meds I'm taking. Remember, I started having the dry scalp around the time my hair became inexplicably straight. (I'm just glad I'm not losing any hair!) Anyway, I'll probably shave my beard entirely to see if I can treat the dry patches. Hopefully I can.
That's all I wanted to mention today...I think...as always! :o)
Good Health to All!
ScottW
Friday, October 8, 2010
08 Oct. 2010
Rough few days.
Ever since that day when I suddenly felt so terrible, I have yet to return to [my new] normal.
Wednesday was simply a long day full of intense headaches, elevated nausea, incredible malaise, three bouts of diarrhea, and LOTS of vertigo. I was supposed to run a few errands but never left the house because of how dizzy I was on a constant basis. I know that part of the dizziness is from the amount of Atenolol I have to take. However, if I don't take it, my BP rises to the dangerous area and my kidneys, heart, lungs and brain would all potentially have serious issues. Before anyone asks--yes, I've tried numerous other BP meds. Atenolol is, for me, the med with the fewest tolerable side effects.
Anyway, today was better nausea-wise, but everything else remains...except the vertigo...that is even worse today. My normal means of stopping it didn't work at all. The spinning and dizziness was occurring even when sitting or laying. Plus, it is taking longer to regain my senses (and balance) whenever it hits me. I've learned to not look up because that either sets off the vertigo, or intensifies it [if I'm already dizzy]. Similar to when I'm walking outside, if I don't keep my head down and focused right in front of my feet, my peripheral vision kicks in and the vertigo does to. REALLY frustrating to be constantly dealing with this so much. I'm hoping that this is temporary--but I have to temper that hope with the understanding that it may not go away anytime soon.
I'm still able to cook for myself (quick things only), and do limited chores around the house (slowly though it is); but if the dizziness doesn't go away, I definitely won't be driving anywhere. I absolutely do not want to endanger myself or anyone else. It's just not worth the risk.
The ammonia smell has also be intensified since the other day. Where before I had grown used to the odor, it is now once again extremely prevalent at almost all times. I'm even smelling it when I've got food under my nose! Yuck! (...and I wonder why I'm finding food unappetizing...)
I don't know if there was anything else I wanted to mention. I just can't remember.
So, I suppose that's all for today.
Good Health to All!
ScottW
Ever since that day when I suddenly felt so terrible, I have yet to return to [my new] normal.
Wednesday was simply a long day full of intense headaches, elevated nausea, incredible malaise, three bouts of diarrhea, and LOTS of vertigo. I was supposed to run a few errands but never left the house because of how dizzy I was on a constant basis. I know that part of the dizziness is from the amount of Atenolol I have to take. However, if I don't take it, my BP rises to the dangerous area and my kidneys, heart, lungs and brain would all potentially have serious issues. Before anyone asks--yes, I've tried numerous other BP meds. Atenolol is, for me, the med with the fewest tolerable side effects.
Anyway, today was better nausea-wise, but everything else remains...except the vertigo...that is even worse today. My normal means of stopping it didn't work at all. The spinning and dizziness was occurring even when sitting or laying. Plus, it is taking longer to regain my senses (and balance) whenever it hits me. I've learned to not look up because that either sets off the vertigo, or intensifies it [if I'm already dizzy]. Similar to when I'm walking outside, if I don't keep my head down and focused right in front of my feet, my peripheral vision kicks in and the vertigo does to. REALLY frustrating to be constantly dealing with this so much. I'm hoping that this is temporary--but I have to temper that hope with the understanding that it may not go away anytime soon.
I'm still able to cook for myself (quick things only), and do limited chores around the house (slowly though it is); but if the dizziness doesn't go away, I definitely won't be driving anywhere. I absolutely do not want to endanger myself or anyone else. It's just not worth the risk.
The ammonia smell has also be intensified since the other day. Where before I had grown used to the odor, it is now once again extremely prevalent at almost all times. I'm even smelling it when I've got food under my nose! Yuck! (...and I wonder why I'm finding food unappetizing...)
I don't know if there was anything else I wanted to mention. I just can't remember.
So, I suppose that's all for today.
Good Health to All!
ScottW
Tuesday, October 5, 2010
05 Oct. 2010
It's been a week since I last wrote? Wow.
Well, what to tell you today....
Let's start with today. I awoke after having 5.5 hours of sleep, and just felt off all day. My headache has been at an 8 all day; No relief. At about 730p I started feeling awful. I'm talking nauseated, the headache, all over body aches, a complete feeling of physical exhaustion. This all (except the headache) came on within just a few minutes. I laid down for well over an hour just hoping that this would pass. I finally fell asleep, and stayed there for four more hours. Upon awaking, the nausea was less, the headache less, and the body aches were lessened as well. I', still feeling exhausted, but also to a lesser degree. Feeling like this is a first for me. (And I really don't want to feel like it again!)
The rest of my days since the last entry have been a mix of all the usual S/S's. The headache has continued its elevated intensity with no clear reason as to why. The malaise I've been feeling so strongly is refusing to go away; and the instances of vertigo have stayed above normal. My appetite has been abysmal over the last week. I'm eating far less than normal, and am not getting he least bit hungry. I am trying to get liquids down so that I'm staying hydrated; but I can still go hours without even thinking about needing a drink of anything--and that's with having a water bottle within sight and arms reach just about all of the time!
I don't know why the sudden uptick in all of my S/S's, but I'll definitely be asking my doc about it when I see him on the 18th. In spite of all of this, I continue to try every day to keep my mind on solid ground. I've undoubtedly slipped a bit since all of the increases; but I try nevertheless.
That's about all the energy I've got for this entry. Let's have better days ahead!
Good Health to All!
ScottW
Well, what to tell you today....
Let's start with today. I awoke after having 5.5 hours of sleep, and just felt off all day. My headache has been at an 8 all day; No relief. At about 730p I started feeling awful. I'm talking nauseated, the headache, all over body aches, a complete feeling of physical exhaustion. This all (except the headache) came on within just a few minutes. I laid down for well over an hour just hoping that this would pass. I finally fell asleep, and stayed there for four more hours. Upon awaking, the nausea was less, the headache less, and the body aches were lessened as well. I', still feeling exhausted, but also to a lesser degree. Feeling like this is a first for me. (And I really don't want to feel like it again!)
The rest of my days since the last entry have been a mix of all the usual S/S's. The headache has continued its elevated intensity with no clear reason as to why. The malaise I've been feeling so strongly is refusing to go away; and the instances of vertigo have stayed above normal. My appetite has been abysmal over the last week. I'm eating far less than normal, and am not getting he least bit hungry. I am trying to get liquids down so that I'm staying hydrated; but I can still go hours without even thinking about needing a drink of anything--and that's with having a water bottle within sight and arms reach just about all of the time!
I don't know why the sudden uptick in all of my S/S's, but I'll definitely be asking my doc about it when I see him on the 18th. In spite of all of this, I continue to try every day to keep my mind on solid ground. I've undoubtedly slipped a bit since all of the increases; but I try nevertheless.
That's about all the energy I've got for this entry. Let's have better days ahead!
Good Health to All!
ScottW
Tuesday, September 28, 2010
28 Sept. 2010
Unsettling would be a good word to describe the last four days.
Things have just been screwy. I'm not sleeping well (once I actually get to sleep); my appetite has been up and down; my headache has gone from manageable to painful just about every day; the nausea is completely unpredictable, and the malaise has been swinging between minimal and severe. Ick.
The insomnia I have--a common S/S in advanced PCKD patients--is getting a bit worse. I used to average about seven hours of sleep just a few months ago. Now, I'm lucky to get five good, quality hours per day. No matter how tied I am, getting to sleep is difficult, at best. Just yesterday I was laying down for an hour before drifting off; and this after being awake for 22 hours (before I laid down). So that you understand how frustrating this is for me, my usual pattern of falling asleep (before the PCKD) was lay down and be out within seconds of my head hitting the pillow. For me, insomnia was waiting a whole five minutes to fall asleep. No kidding.
Additionally, my sleep has been less and less restful. Most days I awaken feeling like I haven't had any sleep at all.
When I say that my appetite has been up and down, I mean to say that it has gone from [my new normal of] 2.5 cups/day to as much as six cups, then down to about 1.5 cups. No pattern or regularity. On the days that I'm actually hungrier than usual I will eat more. Other days the nausea is so bad that almost nothing gets past my lips.
As stated at the beginning of this post, my now 10.5 month headache has been swinging back and forth as well. However, when it gets painful, it has been doing so quicker than usual. The last few days it has increased from a six to an eight seemingly in the blink of an eye. I can usually manage the headache (somewhat) when I feel it becoming stronger. These last few days I have not had that opportunity as it increases immediately in its intensity; which is definitely different. I will keep an eye on this change. If the headache becomes alarmingly severe (at a 10), I'll likely have to go to the ER. One of the first things I was told about this disease is that I'll experience a headache unlike anything I've ever had. Well, I've been at a 10 (on my scale. This includes pain induced blackouts, vomiting and pain so severe you literally can't think.) with my TMD headaches, so I would expect it to be even worse than that. I can hardly wait... (insert appropriate facetious and sarcastic look!)
The nausea these past few days has also not fit the [now] established pattern. Aside from the one day that I not only felt hungry, but also ate (!), the nausea has gone from normal to overwhelming within two or three minutes. No rhyme or reason...it just is. I've taken more anti-emetic the last four days than I have over the previous two weeks. Nasty stuff. Not much fun.
Finally, the malaise I've been experiencing has also seemed to increase for no apparent reason. For instance, I've been meaning to write on this blog for three days. I've even been on it, ready to type, and have decided I just wasn't up for it. I literally couldn't gather the oomph to get it done. I'm doing less housework from day to day, less studying of interests, have done zero creative writing for weeks, and have abandoned my music composition all together. It actually seems overwhelming for some reason. However, I have times like right now when everything snaps back into focus and I can write everything I need, and study, and continue writing a short story I'm working on for a friend of mine. I'll get as much done as I can because it may be a while before I feel like doing so again. Let's hope that's not the case!
I think I've told you everything I had in mind...at least as far as my terrible memory can remember! :o)
Looking forward to a few better days!
Good Health to all!
ScottW
Things have just been screwy. I'm not sleeping well (once I actually get to sleep); my appetite has been up and down; my headache has gone from manageable to painful just about every day; the nausea is completely unpredictable, and the malaise has been swinging between minimal and severe. Ick.
The insomnia I have--a common S/S in advanced PCKD patients--is getting a bit worse. I used to average about seven hours of sleep just a few months ago. Now, I'm lucky to get five good, quality hours per day. No matter how tied I am, getting to sleep is difficult, at best. Just yesterday I was laying down for an hour before drifting off; and this after being awake for 22 hours (before I laid down). So that you understand how frustrating this is for me, my usual pattern of falling asleep (before the PCKD) was lay down and be out within seconds of my head hitting the pillow. For me, insomnia was waiting a whole five minutes to fall asleep. No kidding.
Additionally, my sleep has been less and less restful. Most days I awaken feeling like I haven't had any sleep at all.
When I say that my appetite has been up and down, I mean to say that it has gone from [my new normal of] 2.5 cups/day to as much as six cups, then down to about 1.5 cups. No pattern or regularity. On the days that I'm actually hungrier than usual I will eat more. Other days the nausea is so bad that almost nothing gets past my lips.
As stated at the beginning of this post, my now 10.5 month headache has been swinging back and forth as well. However, when it gets painful, it has been doing so quicker than usual. The last few days it has increased from a six to an eight seemingly in the blink of an eye. I can usually manage the headache (somewhat) when I feel it becoming stronger. These last few days I have not had that opportunity as it increases immediately in its intensity; which is definitely different. I will keep an eye on this change. If the headache becomes alarmingly severe (at a 10), I'll likely have to go to the ER. One of the first things I was told about this disease is that I'll experience a headache unlike anything I've ever had. Well, I've been at a 10 (on my scale. This includes pain induced blackouts, vomiting and pain so severe you literally can't think.) with my TMD headaches, so I would expect it to be even worse than that. I can hardly wait... (insert appropriate facetious and sarcastic look!)
The nausea these past few days has also not fit the [now] established pattern. Aside from the one day that I not only felt hungry, but also ate (!), the nausea has gone from normal to overwhelming within two or three minutes. No rhyme or reason...it just is. I've taken more anti-emetic the last four days than I have over the previous two weeks. Nasty stuff. Not much fun.
Finally, the malaise I've been experiencing has also seemed to increase for no apparent reason. For instance, I've been meaning to write on this blog for three days. I've even been on it, ready to type, and have decided I just wasn't up for it. I literally couldn't gather the oomph to get it done. I'm doing less housework from day to day, less studying of interests, have done zero creative writing for weeks, and have abandoned my music composition all together. It actually seems overwhelming for some reason. However, I have times like right now when everything snaps back into focus and I can write everything I need, and study, and continue writing a short story I'm working on for a friend of mine. I'll get as much done as I can because it may be a while before I feel like doing so again. Let's hope that's not the case!
I think I've told you everything I had in mind...at least as far as my terrible memory can remember! :o)
Looking forward to a few better days!
Good Health to all!
ScottW
Friday, September 24, 2010
24 Sept. 2010
The last two days have been somewhat better.
I awoke yesterday with reduced headache (at about 7 again), reduced nausea, and with a touch more energy. Still no food all day until around 8p--I just wasn't hungry; nor did I want to feel like I would once I ate. However, as the day wore on, everything once again began intensifying. My one meal did what has now become routine, and the nausea started to become overwhelming; so much so that I had to take a half dose of Promethazine. Two hours later, the nausea still had not retreated, so another half dose was taken. Even then (with a full dose of anti-emetic), I still was unable to sleep for another three long, terrible hours. On top of everything else, I was cold last night. I'm talking shivering inside the house cold. When I went to bed I lay there shivering for about 45 minutes before I was able to drift off to sleep. What a night!
Upon awaking today, things seemed to have calmed down. My headache is finally back to a steady 5; the nausea has backed off to its new normal; the vertigo seems to be a bit decreased today, and my vision is a little better. On the other hand, I've had two bouts of diarrhea today and the edema in my lower legs looks the same as it has all week. Also, I am experiencing increased mid-back pain today that is centered over both kidney's. So, mixed news for today--thus far, at least.
All in all, the last two days have been a bit better.
Good Health to All!
ScottW
I awoke yesterday with reduced headache (at about 7 again), reduced nausea, and with a touch more energy. Still no food all day until around 8p--I just wasn't hungry; nor did I want to feel like I would once I ate. However, as the day wore on, everything once again began intensifying. My one meal did what has now become routine, and the nausea started to become overwhelming; so much so that I had to take a half dose of Promethazine. Two hours later, the nausea still had not retreated, so another half dose was taken. Even then (with a full dose of anti-emetic), I still was unable to sleep for another three long, terrible hours. On top of everything else, I was cold last night. I'm talking shivering inside the house cold. When I went to bed I lay there shivering for about 45 minutes before I was able to drift off to sleep. What a night!
Upon awaking today, things seemed to have calmed down. My headache is finally back to a steady 5; the nausea has backed off to its new normal; the vertigo seems to be a bit decreased today, and my vision is a little better. On the other hand, I've had two bouts of diarrhea today and the edema in my lower legs looks the same as it has all week. Also, I am experiencing increased mid-back pain today that is centered over both kidney's. So, mixed news for today--thus far, at least.
All in all, the last two days have been a bit better.
Good Health to All!
ScottW
Wednesday, September 22, 2010
22 Sept. 2010
It's been a pretty rough few days.
Sometime on Monday my nausea began an uptick in intensity and duration. Along with it, my avg. headache level increased from 6 to 8. Other S/S's also increased such as vertigo, general dizziness, increased cloudiness (particulates) of my urine, increased blurriness of vision, decreased appetite, greater abdominal sensitivity, increased insomnia, etc.
Then yesterday (Tuesday) everything I'd been feeling on Monday intensified even further. I ate just one small sandwich all day (which, of course, made me feel even worse!), plus one small float for extra sugars so I could get at least a little bit of energy. That was all I ate all day. No kidding. The one time I did eat (that sandwich) I had the now inevitable abdominal reaction before I was halfway done. I'll be honest...it sucked; and even though I needed the food, I regretted eating because it put me on the edge until a half dose of the anti-emetic was able to calm everything down.
I can hear some readers out there asking why I didn't take the anti-emetic sooner. Well, I use that med as a last resort. Because of how it makes me feel hours after taking it, I just don't like using it unless everything else fails to take care of the nausea. Even so, I'm only taking a half dose because a full dose of the promethazine kicks my butt for as much as 12-14 hours. Again...Last Resort to keep me from vomiting.
Anyhow, even with the anti-emetic I was up all night, then got just five hours sleep before being awoken by both nausea and headache. Meds for both were utilized right after I woke up, followed by my normal Rx regimen. I tried eating something sooner than 7p, and had to stop after the very first bite. I didn't try again until 8p. My time today was spent just trying to get through the day. No matter what I was doing, or whether I was sitting or laying, I just felt horrible all day. I don't really know another worthwhile or better adjective to describe what I had to get through today. It was one of my worst complete days, yet.
So, that's all the energy (or the inclination) I've got for writing tonight. Hopefully I'll awaken feeling better, more refreshed, and in a far better mindset than I am right now.
...Just a tough day.
Good Health to All!
ScottW
Sometime on Monday my nausea began an uptick in intensity and duration. Along with it, my avg. headache level increased from 6 to 8. Other S/S's also increased such as vertigo, general dizziness, increased cloudiness (particulates) of my urine, increased blurriness of vision, decreased appetite, greater abdominal sensitivity, increased insomnia, etc.
Then yesterday (Tuesday) everything I'd been feeling on Monday intensified even further. I ate just one small sandwich all day (which, of course, made me feel even worse!), plus one small float for extra sugars so I could get at least a little bit of energy. That was all I ate all day. No kidding. The one time I did eat (that sandwich) I had the now inevitable abdominal reaction before I was halfway done. I'll be honest...it sucked; and even though I needed the food, I regretted eating because it put me on the edge until a half dose of the anti-emetic was able to calm everything down.
I can hear some readers out there asking why I didn't take the anti-emetic sooner. Well, I use that med as a last resort. Because of how it makes me feel hours after taking it, I just don't like using it unless everything else fails to take care of the nausea. Even so, I'm only taking a half dose because a full dose of the promethazine kicks my butt for as much as 12-14 hours. Again...Last Resort to keep me from vomiting.
Anyhow, even with the anti-emetic I was up all night, then got just five hours sleep before being awoken by both nausea and headache. Meds for both were utilized right after I woke up, followed by my normal Rx regimen. I tried eating something sooner than 7p, and had to stop after the very first bite. I didn't try again until 8p. My time today was spent just trying to get through the day. No matter what I was doing, or whether I was sitting or laying, I just felt horrible all day. I don't really know another worthwhile or better adjective to describe what I had to get through today. It was one of my worst complete days, yet.
So, that's all the energy (or the inclination) I've got for writing tonight. Hopefully I'll awaken feeling better, more refreshed, and in a far better mindset than I am right now.
...Just a tough day.
Good Health to All!
ScottW
Sunday, September 19, 2010
19 Sept. 2010
My apologies [up front] if my grammar is off today or I have multiple spelling errors. I woke up today feeling awful! And it hasn't gotten any better.
Yesterday was just OK. While the nausea was decreased, my headache wasn't. It averaged about a 7 on my scale. Add to that a complete day of intense fatigue, increased edema in my legs, increased malaise, increased mid-back pain with sensitivity over the kidneys, increased blurriness of my vision, and a complete lack of appetite. I got almost nothing done around the house, and just had to sit on my butt all day. My appetite was so poor that I didn't even have the desire to eat until 9p. On top of all of that, I couldn't get to sleep until 8a this morning because of increased nausea and the headache. I ended up taking the aqnti-emetic in order to get to sleep.
So, after awaking I was not only dealing with the after effects of the med (which you know I hate!), but the nausea was full-blown once again, and my head was a raging 9. The other S/S's are also continuing; so, you can imaging that I'm not having fun today.
I can only look forward to a better tomorrow, and continue to do my best today to keep my mind in a good place, and keep holding a positive future in my heart.
**On a side note, my friend Monica G. introduced me to a cool website that she is helping get off the ground. It is called "Intersect." On it you can share life stories and see what other people are experiencing today, or ten years ago, etc. The site creators envision an experience that will eventually show us how connected we all are to the rest of the world; how our lives literally "Intersect" with people everywhere.
Please, go take a look at the site. Right now it is only in the beta test phase; but I can get the beta code to access the site. If you'd like to join, just let me know and I'll ask Monica for a code that I can pass on. Goo see Intersect.com! I'm really excited with it, and have already made a number of entries.
That's all for today.
Good Health to All!
ScottW
Yesterday was just OK. While the nausea was decreased, my headache wasn't. It averaged about a 7 on my scale. Add to that a complete day of intense fatigue, increased edema in my legs, increased malaise, increased mid-back pain with sensitivity over the kidneys, increased blurriness of my vision, and a complete lack of appetite. I got almost nothing done around the house, and just had to sit on my butt all day. My appetite was so poor that I didn't even have the desire to eat until 9p. On top of all of that, I couldn't get to sleep until 8a this morning because of increased nausea and the headache. I ended up taking the aqnti-emetic in order to get to sleep.
So, after awaking I was not only dealing with the after effects of the med (which you know I hate!), but the nausea was full-blown once again, and my head was a raging 9. The other S/S's are also continuing; so, you can imaging that I'm not having fun today.
I can only look forward to a better tomorrow, and continue to do my best today to keep my mind in a good place, and keep holding a positive future in my heart.
**On a side note, my friend Monica G. introduced me to a cool website that she is helping get off the ground. It is called "Intersect." On it you can share life stories and see what other people are experiencing today, or ten years ago, etc. The site creators envision an experience that will eventually show us how connected we all are to the rest of the world; how our lives literally "Intersect" with people everywhere.
Please, go take a look at the site. Right now it is only in the beta test phase; but I can get the beta code to access the site. If you'd like to join, just let me know and I'll ask Monica for a code that I can pass on. Goo see Intersect.com! I'm really excited with it, and have already made a number of entries.
That's all for today.
Good Health to All!
ScottW
Friday, September 17, 2010
17 Sept. 2010
I had the psychological evaluation yesterday that is required in my application for disability.
It must be admitted that I was a bit apprehensive in the days leading up to the eval. I was concerned that the psychologist would try and get me to contradict my words in a effort to find cause for denying disability. So, I contacted a brother in-law who is a director (?) of the Central Florida University School of Neurology. He inquired with associates in the psychology dept about an evaluation such as I was going to have.
I was assured that the evaluation was only to measure my psychological fitness for the upcoming dialysis and eventual transplantation (and the ensuing, very strict Rx regimen). The State just wants to be sure I'm not a drug addict, alcoholic, extremely depressed, etc. After all, disability is not just about financial aid--it's also about the extensive payout for medicare costs for the fistula implant, dialysis costs, transplantation surgery and care, and for (up to) three years of anti-rejection meds (avg cost, $18K+/year).
Anyway, the psychologist I met with put me at complete ease immediately. We had a really nice conversation/ evaluation. I received immediate feedback about how I'm doing mentally with everything. She told me that I wasn't depressed; that I am handling everything I'm going through extremely well; that I have "A good energy about me"; and that she is quite confident in my ability to handle everything that is coming up.
It was a very positive experience! I walked out of there relaxed, and confident that everything will fall into place. What a relief!!! (Now, as to whether or not I get disability, I will find out in a few weeks, or so.)
So, good news in my ongoing efforts to receive the aid that I currently find myself in need of.
Good Health to All!
ScottW
It must be admitted that I was a bit apprehensive in the days leading up to the eval. I was concerned that the psychologist would try and get me to contradict my words in a effort to find cause for denying disability. So, I contacted a brother in-law who is a director (?) of the Central Florida University School of Neurology. He inquired with associates in the psychology dept about an evaluation such as I was going to have.
I was assured that the evaluation was only to measure my psychological fitness for the upcoming dialysis and eventual transplantation (and the ensuing, very strict Rx regimen). The State just wants to be sure I'm not a drug addict, alcoholic, extremely depressed, etc. After all, disability is not just about financial aid--it's also about the extensive payout for medicare costs for the fistula implant, dialysis costs, transplantation surgery and care, and for (up to) three years of anti-rejection meds (avg cost, $18K+/year).
Anyway, the psychologist I met with put me at complete ease immediately. We had a really nice conversation/ evaluation. I received immediate feedback about how I'm doing mentally with everything. She told me that I wasn't depressed; that I am handling everything I'm going through extremely well; that I have "A good energy about me"; and that she is quite confident in my ability to handle everything that is coming up.
It was a very positive experience! I walked out of there relaxed, and confident that everything will fall into place. What a relief!!! (Now, as to whether or not I get disability, I will find out in a few weeks, or so.)
So, good news in my ongoing efforts to receive the aid that I currently find myself in need of.
Good Health to All!
ScottW
Monday, September 13, 2010
13 Sept. 10
Because of all the sleep I got on Friday, I wasn't able to sleep until 10A om Saturday.
I then set my alarm for just five hours of sleep, which I followed. When I awoke, the nausea had returned, though not as intense as on Friday. It stayed with me all day. I ate very little because of it, but had extra water and a couple of Coke floats to at least get liquid and some sugars into my body for fuel. Also, my headache remained a constant 6 all day. Nothing terrible--just always there, hurting and bothering me.
Yesterday (Sunday) was about the same. The only real differences were that I actually took a chance and got a little food down--twice--and the edema in my legs looked less than the previous number of days. However, as the night progressed, the nausea intensified, and I ended up taking a half dose of the anti-emetic before going to bed.
Today has, so far, been a repeat of the last two days. Overall, I'm feeling pretty lousy.
There was something else I wanted to add today...but I just can't think of it; which is frustrating for me. I am used to having a quick, strong mind with a near photographic memory. Before having the PCKD S/S's fully emerge, I was a 3.70 GPA student; and my professors were excited about my very near future in Political Science. Now, my short term memory is shot; I have to think harder on basic concepts, my spelling is atrocious (thank goodness for spell-check!), and my frustrations with even simple tasks are mounting. I just try to remember that this is only temporary, and that once I receive a transplant, my mind will snap back into place and I'll take off towards my goals (and actual living!) once again.
Patience.
Patience. I'll be there again...
Good Health to All!
ScottW
I then set my alarm for just five hours of sleep, which I followed. When I awoke, the nausea had returned, though not as intense as on Friday. It stayed with me all day. I ate very little because of it, but had extra water and a couple of Coke floats to at least get liquid and some sugars into my body for fuel. Also, my headache remained a constant 6 all day. Nothing terrible--just always there, hurting and bothering me.
Yesterday (Sunday) was about the same. The only real differences were that I actually took a chance and got a little food down--twice--and the edema in my legs looked less than the previous number of days. However, as the night progressed, the nausea intensified, and I ended up taking a half dose of the anti-emetic before going to bed.
Today has, so far, been a repeat of the last two days. Overall, I'm feeling pretty lousy.
There was something else I wanted to add today...but I just can't think of it; which is frustrating for me. I am used to having a quick, strong mind with a near photographic memory. Before having the PCKD S/S's fully emerge, I was a 3.70 GPA student; and my professors were excited about my very near future in Political Science. Now, my short term memory is shot; I have to think harder on basic concepts, my spelling is atrocious (thank goodness for spell-check!), and my frustrations with even simple tasks are mounting. I just try to remember that this is only temporary, and that once I receive a transplant, my mind will snap back into place and I'll take off towards my goals (and actual living!) once again.
Patience.
Patience. I'll be there again...
Good Health to All!
ScottW
Friday, September 10, 2010
10 Sept. 10
My day that wasn't.
That's how it feels, at least. I was awoken this morning with intense nausea after just three hours of "sleep." Without hesitation I took a half dose of the anti-emetic and laid back down. Five hours later I woke up--groggy like always--the nausea gone, but a nasty headache of 9 raging instead. After taking a med for that, I slept again for an hour and a half.
Awaking from that little nap, my headache was untouched; so, another med to try and alleviate the pain. I was awake for about an hour, fell asleep again, and slept for another two. This time when I woke up, both the nausea and headache were minimal (yay!!). Because of the sleep and side effects of the anti-emetic, I didn't eat anything until almost 8p.
So, my day has gone by me without much recognition of it having been a full day.
And that was my whole day...Woo-Hoo!
Good Health to All!
ScottW
That's how it feels, at least. I was awoken this morning with intense nausea after just three hours of "sleep." Without hesitation I took a half dose of the anti-emetic and laid back down. Five hours later I woke up--groggy like always--the nausea gone, but a nasty headache of 9 raging instead. After taking a med for that, I slept again for an hour and a half.
Awaking from that little nap, my headache was untouched; so, another med to try and alleviate the pain. I was awake for about an hour, fell asleep again, and slept for another two. This time when I woke up, both the nausea and headache were minimal (yay!!). Because of the sleep and side effects of the anti-emetic, I didn't eat anything until almost 8p.
So, my day has gone by me without much recognition of it having been a full day.
And that was my whole day...Woo-Hoo!
Good Health to All!
ScottW
Wednesday, September 8, 2010
09 Sept. 10
Three more days of consistency.
Though I have not had any overwhelming nausea, it is always present nonetheless. I am still getting nauseous after eating (higher at times than others; but it always ramps up). Speaking of eating, I actually got hungry the other day (amazing, I know). Unfortunately, after feeling that for about five minutes, the hunger turned into increased nausea. I just can't win! ;o)
Something is causing increased vertigo a/o general dizziness. I am experiencing a LOT of vertigo! Thankfully, I have my cane to lean on when walking outside the house. Last time I was outside, every time I'd look up and around, I felt like my whole body was on some carnival ride as imbalance, dizziness and nausea would all grip my body. In order to alleviate it, I had to look forward, and down to minimize what even my peripheral vision was seeing. Inside, I am grabbing counter tops, wall corners, tabletops, etc multiple times per day. I've noticed the vertigo is happening even when turning my whole body to look at something. It's all very annoying, extremely disconcerting, and I am getting concerned by its frequency.
The fatigue continues to be an obstacle. I did some housework yesterday (about 30 minutes worth to a healthy person), and it took me over three hours to get finished...well, not finished. I got as much done as I could before having to stop due to lack of energy.
The headache remains...and I'll leave it at that today.
And speaking of headaches, I was supposed to have my neurology appointment yesterday, but my insurance got dropped and I am now applying for medicaid. No alternative for me. So, assuming I am approved, I'll reset the neurology appointment.
And...never mind. I forgot what else I wanted to write...again. C'est La Vie.
Good Health to All!
ScottW
Though I have not had any overwhelming nausea, it is always present nonetheless. I am still getting nauseous after eating (higher at times than others; but it always ramps up). Speaking of eating, I actually got hungry the other day (amazing, I know). Unfortunately, after feeling that for about five minutes, the hunger turned into increased nausea. I just can't win! ;o)
Something is causing increased vertigo a/o general dizziness. I am experiencing a LOT of vertigo! Thankfully, I have my cane to lean on when walking outside the house. Last time I was outside, every time I'd look up and around, I felt like my whole body was on some carnival ride as imbalance, dizziness and nausea would all grip my body. In order to alleviate it, I had to look forward, and down to minimize what even my peripheral vision was seeing. Inside, I am grabbing counter tops, wall corners, tabletops, etc multiple times per day. I've noticed the vertigo is happening even when turning my whole body to look at something. It's all very annoying, extremely disconcerting, and I am getting concerned by its frequency.
The fatigue continues to be an obstacle. I did some housework yesterday (about 30 minutes worth to a healthy person), and it took me over three hours to get finished...well, not finished. I got as much done as I could before having to stop due to lack of energy.
The headache remains...and I'll leave it at that today.
And speaking of headaches, I was supposed to have my neurology appointment yesterday, but my insurance got dropped and I am now applying for medicaid. No alternative for me. So, assuming I am approved, I'll reset the neurology appointment.
And...never mind. I forgot what else I wanted to write...again. C'est La Vie.
Good Health to All!
ScottW
Sunday, September 5, 2010
05 Sept. 10
Not much change from my last report.
The nausea continues its relentless wracking of my body. I had to take a dose on the anti-emetic yesterday to keep from getting overwhelmingly sick. Today finds the nausea decreased somewhat; though it will increase suddenly, making me feel awful until it dies down again.
My headache has continued unabated. It has been consistently between 7-9 for the last three days. Food, water, regular Tylenol (no ibuprofen! It is metabolized in the kidneys and will damage them further.), nothing helps. The T3's only mask the pain temporarily...not that I'm complaining about that. At least I can get a few hours break.
The last few weeks I have felt really tired all of the time (I think I alluded to that in an earlier post). This continues day after day with my continuing to be unable to pin down any reason for it. It may simply be due to the kidney disease itself. I'd have to do some research on that to know the validity of that possibility. What I do know is that I have continued to awaken every day feeling as if I didn't get any sleep.
As my body has grown more fatigued, my mind has also grown fatigued. I have been trying to study various subjects, do some creative writing, etc, all in an effort to both keep my mind busy, as well as to keep it sharp and in a good, positive place. Since I began feeling fatigued, my ability to concentrate on these mental endeavors has gone down. I'm still reading a lot of news, and play games that challenge my mind with analysis, problem solving, etc. However, the studying and various creative endeavors are falling behind. I will continue to work on these things and keep challenging my brain as much as I feel able to do.
The nausea continues its relentless wracking of my body. I had to take a dose on the anti-emetic yesterday to keep from getting overwhelmingly sick. Today finds the nausea decreased somewhat; though it will increase suddenly, making me feel awful until it dies down again.
My headache has continued unabated. It has been consistently between 7-9 for the last three days. Food, water, regular Tylenol (no ibuprofen! It is metabolized in the kidneys and will damage them further.), nothing helps. The T3's only mask the pain temporarily...not that I'm complaining about that. At least I can get a few hours break.
The last few weeks I have felt really tired all of the time (I think I alluded to that in an earlier post). This continues day after day with my continuing to be unable to pin down any reason for it. It may simply be due to the kidney disease itself. I'd have to do some research on that to know the validity of that possibility. What I do know is that I have continued to awaken every day feeling as if I didn't get any sleep.
As my body has grown more fatigued, my mind has also grown fatigued. I have been trying to study various subjects, do some creative writing, etc, all in an effort to both keep my mind busy, as well as to keep it sharp and in a good, positive place. Since I began feeling fatigued, my ability to concentrate on these mental endeavors has gone down. I'm still reading a lot of news, and play games that challenge my mind with analysis, problem solving, etc. However, the studying and various creative endeavors are falling behind. I will continue to work on these things and keep challenging my brain as much as I feel able to do.
Over the course of this past week I have been eating (with consistency) just one meal per day, with a few small snacks throughout the day. I'm still eating somewhere around 2.5 cups of food per day, plus water, milk, etc. Not even close to enough for someone of my height; but I do my best to overcome this lack of appetite and forgetfulness to eat.
There was something else I wanted to tell you; but I just don't remember.
A Safe Holiday for Everyone!
Good Health to All!
ScottW
Friday, September 3, 2010
02 Sept. 10
What a difference a day makes.
It would seem that my brief respite from major S/S's is now over. Wednesday morning I awoke feeling off [from the previous number of days]. As the day wore on, my nausea increased dramatically, and my headache came roaring back; going from a manageable 5 up to a painful 9. Also, I had three bouts of diarrhea over the course of the day, in spite of using Imodium as a means to stop it. I tried using all the usual methods to relieve both the headache and the nausea, but to no avail. I finally took the ant-emetic in the evening, as well as two T3's for my head. These two symptoms were so bad (I admittedly waited too long to take either), that full doses of both only helped to make me comfortable...barely. Even though the anti-emetic knocked me out (as it usually does), I slept poorly; waking often and turning frequently.
Today, the nausea has decreased enough that I don't need the anti-emetic--but the nausea is certainly by no means gone. I've been chewing on Tums all day, and snacking frequently. The headache has once again continued from yesterday's high of 9 without interruption. Plus, my energy was just not there today. It would seem that I am back to the full-bore S/S's once more. Not my best day; but considering the relative break I've had, I am not going to complain one bit.
My appetite continues to be minimal from day to day. I think I've already stated that I rarely eat because I'm hungry. No, I'm usually eating now because I need food in my body. I've even noticed that my snacking has gone way down. If I'm not hungry, I've got to try and remember to eat more; and with my short-term memory being what it now is, I'm forgetting to snack, drink water, etc. I can only continue to try my best.
I believe that's all for now. (At least...I believe I've remembered everything I wanted to write.)
Good Health to All!
ScottW
It would seem that my brief respite from major S/S's is now over. Wednesday morning I awoke feeling off [from the previous number of days]. As the day wore on, my nausea increased dramatically, and my headache came roaring back; going from a manageable 5 up to a painful 9. Also, I had three bouts of diarrhea over the course of the day, in spite of using Imodium as a means to stop it. I tried using all the usual methods to relieve both the headache and the nausea, but to no avail. I finally took the ant-emetic in the evening, as well as two T3's for my head. These two symptoms were so bad (I admittedly waited too long to take either), that full doses of both only helped to make me comfortable...barely. Even though the anti-emetic knocked me out (as it usually does), I slept poorly; waking often and turning frequently.
Today, the nausea has decreased enough that I don't need the anti-emetic--but the nausea is certainly by no means gone. I've been chewing on Tums all day, and snacking frequently. The headache has once again continued from yesterday's high of 9 without interruption. Plus, my energy was just not there today. It would seem that I am back to the full-bore S/S's once more. Not my best day; but considering the relative break I've had, I am not going to complain one bit.
My appetite continues to be minimal from day to day. I think I've already stated that I rarely eat because I'm hungry. No, I'm usually eating now because I need food in my body. I've even noticed that my snacking has gone way down. If I'm not hungry, I've got to try and remember to eat more; and with my short-term memory being what it now is, I'm forgetting to snack, drink water, etc. I can only continue to try my best.
I believe that's all for now. (At least...I believe I've remembered everything I wanted to write.)
Good Health to All!
ScottW
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