31 May 10

First off, I hope that everyone enjoys this Memorial Day holiday; and, that you take a few minutes to reflect upon those who have given their lives to establish and defend this country.

Well, in the six days since my last entry, things continue to go up and down for me. Today, for instance, is a good day. I'm not overly nauseated, kidney pain is...better, and I actually ate already! Let's hope that the "good" day I'm having holds up.

Over the previous five days however, things have not been as up as today. LOTS of nausea, kidney pain and intense headaches (usually at a 7 or higher!). I have been eating [literally] next to nothing the last few days. I'm just not hungry. My sleep has not been restful, and I've been out of the house only a couple of times...I just wasn't feeling up to doing anything.

So, unlike I had wished for, the week never did get better. Oh well...It's a new week, and I'm already off on a good start! Let's see if I can continue this 'streak' of feeling better! But you know...it really doesn't matter how many days in a row I feel good. I just appreciate getting even a brief rest from the usual day to day. Every time it happens I will enjoy my day, probably over-do things (and completely exhaust myself in the process!), go out and about, see a movie, go on a walk, laughing and smiling and just enjoying my life!

I have noticed that even when taking the diuretic that my urinary output has lessened even from when I first took it a month ago. I had been taking the diuretic every other day (or less), but have since increased it to every day because of the decreased volume filtering through my kidneys. (My doc already said I could take it every day if I thought I needed to.) You can visibly see the edema in my legs as my ankle bones are nearly indistinguishable now, and my feet are looking bloated. Plus, there's the itching on my feet and lower legs that my doc said would be evidenced as the skin is being stretched from the edema.

I have also been told that my skin is looking a bit ashen in color. This, very simply, means that the skin cells are not being properly oxygenated. Something related to toxin levels, decreased RBC production (anemia), and less O2 exchange in the alveoli because of these things. (I'm not really sure of all the pathophysiology involved.) Anyway, No surprise there!

So there you have it...All caught up!

Good Health to All!

ScottW

25 May 10

I have not had the overall respite I was hoping for.

The last three days have been challenging. The kidney pain has been cycling between feeling so-so and feeling painful. Nothing I've observed points to any one thing initiating the increases of pain. It continues however, to follow the pattern of intense bouts of nausea. It could just be coincidental, but I'll keep paying attention to that.

I have noticed that I'm feeling more tired, more often. I know my sleep is screwed up, and that a good night of sleep for me is now five solid hours. Despite these things, I just feel tired all over, almost all of the time. It is getting harder to keep my thoughts in a good place. I am still successful every day; but it is starting to take more focus.

Speaking of that, I've had a couple of people telling me to be careful about propping myself up to everyone as if I'm trying to show the world that I'm so awesome and stoic...Like...Captain Amazing! :o)

I don't know that I really explain it very well. But I'll keep trying...

You see, I don't want to be seen as someone who is fighting against all odds; who is triumphing against this horrible disease; that I will rise up and be a strong, stoic, square-jawed hero who has done what no one else before has accomplished!...No. I just want to be strong enough mentally to avoid slipping into a defeating depression.

My being consciously strong against the disease is only for me. I talk about how I'm doing so I don't internalize things. I use these dialogues to remind myself of what is important, and to continue doing what I must in order to keep my mind sharp, focused and ready for what still lies ahead.

If some people choose to think I'm merely inflating my sense of self importance, well, that's really their choice. I can't stop them from having those thoughts. But if they really know me, they know that I am not someone who puffs my chest and walks around full of my own self-importance.

So, I will continue on as I have, fighting the good fight so long as I am able. I will continue to accept all the thoughts and prayers thankfully sent my way...because without the support I get, this thing I'm going through would be awfully lonely, and incredibly more difficult.

(I still don't know that I'm explaining it very well, but I hope I've at least conveyed my point of view well enough for everyone to sort of understand my approach.)

Anyway, that's all I've got for today. Not the beginning to the week I was hoping for; but, it's only just started!

Good Health to All!

ScottW

22 May 10

Had another long bout of intense nausea hit me yesterday.

This time it didn't last a few hours...it was literally all day. I had awoken with a bit of nausea, but it really came on after I had taken my daily regimen of meds. Just like the last bout, nothing I did was able to alleviate the symptoms.

Today however, is another matter entirely. Although I slept poorly, and not nearly enough, I woke up today feeling a lot better. Now, I'm hoping I'll feel this way all day.

As far as the rest of the week, it has been up and down since my previous entry. The up days are beginning to seem like just kind of so-so days. The bad days, on the other hand, seem to be more intense in the S/S's I experience.

In either case, my nausea is more frequent and intense, my kidneys hurt all the time now (and flare to painful...like yesterday), my headache continues on without respite, the edema in my legs is slowly worsening even with the diuretic I am taking, my appetite is absolutely terrible, the diarrhea I've been experiencing continues, my urinary output is decreased further, I am sleeping restlessly, and I am tired all the time now.

I'm hoping that they way I've felt this week is just a temporary thing, and that next week will find me feeling better, with a little more energy and with less kidney pain. We'll see. I'll keep you updated as I feel up to writing.

Let's have a wonderful week!

Good Health to All!

ScottW

16 May 10

Been continuing to feel up and down.

I have my good days and my bad ones. Today, I thought was a good day...until a few hours ago when a long, extreme bout of nausea set in. As I write this it still hasn't died down. I've been having these sudden bouts of nausea hit me about twice each week; but they lasted only 30 minutes or so and were easily alleviated. However, this one has been going on for three hours. To alleviate it I've tried Coke, Pepcid, Tums and Emetrol.
Nothing works.

If this happens with more frequency I'll be putting in a call to my nephrologist to ask if there is a prescription I can get for such terrible nausea.. This makes me wonder if I'll be feeling like this more often. If I will be, at least I've found out about it ahead of time and I can be mentally prepared to face it when it happens on a regular basis.

Everything else is going the same.

As I've already stated, mentally I'm in a great place. I'm smiling often, thinking forward, and looking to my future success in obtaining my advanced college degrees. Feeling terrible is only a bump in the road. Nothing more.
Plus, I've got many friends and family who are seeing me through all of this. Between them all I couldn't fall into depression even if I wanted to...they just wouldn't let that happen! Seriously!

Let's look forward to a great week!

Good Health to All!

ScottW

12 May 10

Things have been up and down since my last entry.

I awaken feeling OK, but soon start feeling worse as the day progresses. It usually begins when I ingest my morning meds. As I have been, the meds are preceded by a pepcid; so my getting nauseated doesn't make sense. Anyway, as the day progresses my nausea intensifies to the point that I cannot sleep, no matter how tired I am. This happened last night. I was exhausted at midnight, went to bed, then ended up getting out of bed two hours later having not slept. I was awake for another four hours before I was finally able to fall asleep. Almost as soon as I awoke the whole thing started over once again.

My headache continues at its usual level of 5. At least its consistent.

Still dealing with the diarrhea every day; the edema in my legs continues to slowly worsen; my appetite is awful; the pain in my kidneys flares up more often than not; So, pretty much status quo.

And, that's about all for today.

Good Health to All!

ScottW

10 May 10

A much better day!

After using my NTI device, my headache has returned to its previous level.

Also, my kidney's have backed off pain-wise to the merely uncomfortable level.

My nausea is another matter entirely, though. It is still elevated. I went just about 24 hours today between meals because of it. It's that cycle I described yesterday...I'm nauseated so I don't want to eat; but because I don't eat, my nausea gets worse; and because it's worse, I don't eat. ICK!!!!

Everything else continues on as has been. Nothing extraordinary to tell you.

Good Health to All!

ScottW

09 May 10

What a slide since yesterday's entry.

I awoke today with a terrible headache. On my 1-10 scale, this is a solid 9. This headache though, is a total TMD type. When I awoke, my jaw was sore and the R joint ached and clunked (vs clicked) with every movement. The headache has not let up all day so I will be using my NTI adjunct when I sleep [to help alleviate the muscle tension in the jaw and head]. Hopefully when I awaken tomorrow, the NTI device will have done its usual fabulous job, and the TMD headache will be gone.

Also today, my kidneys have both been aching more than usual. In fact, they have been painful most of the day. The pain is bilateral, though the R kidney hurts slightly more than the left.

Additionally, with the increase in kidney pain came a huge increase in my nausea. Been feeling REALLY yucky all day, and have eaten very little as a result--which of course, just makes the nausea worse than it already is.

So, that's how my day has been. Definitely not one of my better days.

Let's look forward to a better day tomorrow!

Good Health to All!

ScottW

08 May 10

It's been an up and down week for me.

Monday and Tuesday were great. I was feeling better than I had in a number of weeks, my headache was under control, and my appetite was up slightly. I had good sleep, and felt fairly rested, as well. My mind felt lighter than it has for some time.

Wednesday until today, I have completely reversed my earlier gains. Since sometime Wednesday afternoon, my stomach is constantly upset, my headache is back--with a vengeance!, my kidneys have been bordering on painful, I'm eating very little, and I am once again sleeping restlessly (and not enough).

My mind continues to be good. I am able to stay focused, positive and forward-looking. So this aspect hasn't changed. I get out and about as I feel up to it, and enjoy the time I am out of the house. I will sometimes push myself beyond my body's ability to keep going, but I feel it is important to do this so I keep myself as strong as I am able, enjoying what I can, and keeping my heart and mind in a good place. I physically pay for it, but that's OK.

For instance on Thursday, I went to an Art Museum. I was there about forty-five minutes enjoying paintings, sculpture and 15th Century pencil sketches. It was a terrific display! I thoroughly enjoyed it; but thoroughly exhausted my body, and ended up with my kidneys aching terribly--but it was worth it! I wouldn't even think of having it otherwise. I am keeping the thought in my head that I wrote saying, "If you allow life to get the best of you, then you will allow the best of life to pass you by."

So as long as I am physically able, I will continue to do what I can. Some days will be more successful than others; but I will always do my best to enjoy life in spite of what is happening to my body.

Good Health to All!

ScottW

03 May 10

The back pain I was experiencing is a little better.

Sometime over the weekend it subsided to a more comfortable level. I don't know why, but I ain't gonna question it! I will absolutely enjoy life while the pain is subsided!

Also, the diuretic I was prescribed had not had the intense effect I was expecting. I had previously been on a diuretic when I was first diagnosed with High Blood Pressure ten years ago (when I had full kidney function). The first time I took that diuretic I thought I'd never stop urinating! So, I was expecting a similar result this time. I can only surmise that my decreased kidney function is the reason a like result did not happen. To be sure, my urinary output has increased; just not dramatically.

Here's an odd aside for you.

I normally get my haircut once a month--every month. Any longer a time frame and my hair grows far too much. Anyway, both my hairdresser and I have noticed that since the rapid advancement of the disease, my hair is growing slower, is drier than it ever has been, has gotten more grey, and has developed directional growth patters than it has never had. Also, my scalp has dried out significantly and I now have dandruff all the time. This again, has all developed since last Fall. I have been using the same hairdresser for eight years, so she knows my hair. Jolene, my stylist, thinks it is not only the disease, but the meds I am on as well. She has occasionally seen other clients who have experienced a change in hair and scalp conditions when they were placed on a number of meds.
Dang it! Here I thought I was surely going to have thick, healthy, only slightly grey hair well into my years ahead. :o)

That's all I've got today. As always, I hope you are healthy, happy and striving towards success in all that you do.

Good Health to All!

ScottW