17 January 2012

I can't believe it's already been a week since my last entry. Time just flies when one day blends into the next week...

Let's begin with feeling ill. There has been lots of this. That yucky ill feeling has been up and down in its intensity; and today is particularly bad. As far as I'm aware nothing I do exacerbates or initiates it. When it is bad, it makes all the other S/S's seem worse.

The now 26 month-long headache has been nothing but really bad. In fact, the evening after posting my last blog (on the 10th, I think) saw a sudden increase of the headache; and it has yet to back off. My TMD occlusive devices have done no good to alleviate the pain, so I know that my TMD is not involved.  The headache has woken me from sleep several times, and has kept me awake as well.

The flank pain (over both kidneys) has been constant. Quality and intensity has varied only slightly. There have been no sudden, sharp pains--which is good.

The peripheral edema has been going through its normal cycle every day. Extreme edema has not been a factor, however...just the [now] normal swelling all day, followed by reduced edema by morning, lots of voiding, and start all over. My ankles look like a mess of broken capillaries--all purple and ugly.

My sleep continues to be unpredictable. I am averaging between 6-9 hours per night, and 2-5 hours of naps every day. Last week I had a day where I got a solid nine hours sleep, was up for three hours, then fell asleep again for another five. I still went to sleep that night by midnight and slept another seven hours. Which means, over a thirty hour period I got a total of 21 hours of sleep. After all of that, I was still exhausted!

My appetite has been inconsistent as well. On my birthday I actually ate well over my normal intake amount; but then turned around and ate only about a half cup of food the next day. I estimate that I am currently averaging about 1.25 cups of food intake per day, plus around 40 oz's of liquids.

The ammonia smell has been really nasty. I often sense so much ammonia that it's as if someone has put a bowl of it under my nose. Of course, the increased smell has further dulled my ability to smell or even taste foods. Kinda ruins my ability to enjoy what foods I do eat. More and more I eat because I need the fuel; and less because it smells or tastes good. Oh well.

My hands and feet have been extremely cold the past week. In spite of a house temp in the low 70's, I am always in a fleece jacket and either under a blanket, or have my warm booties on. Even then I still get cold. My being cold in bed is no longer an issue since my son gave me a nice electric blanket. Ahh!  :o)

The cramping in my lower legs continues. I still haven't found anything to stop it. My calves ache all the time from the constant cramping. About the only good news on this front is that my toes are not going into spasms. Those really hurt!

Another good bit of news is that that string of days with diarrhea is over...for the moment. As with its onset, I don't know the why of it; but you'll find no complaints about it stopping from me!

My urine output is still consistent (damn!), as are the characteristics of it. I still have zero indications of kidney stones, or overt signs of blood from my kidneys. There is not yet any sign of ammonia crystallization on my skin.

Lastly, my energy level seems to be decreasing every day. I get less and less done, and feel more and more exhausted. One of the reasons I take so long to get to my blog is because of feeling like I have no energy. My brain says, "Get it done!" My body says, "Umm...No."   :o)

That is it for today. I won't even try to remember what else I wanted to tell you.

Good Health to All!

ScottW