18 February 2012

In the five days since my last entry, I have yet to get even a small break from the S/S's hitting me so hard.

Just like last time, let's begin by discussing the headache. Ever-present; no relief; go to sleep with it; wake in the night because of it; T3's are barely touching it; making me miserable all by itself. Yeah...that pretty much sums up this damned headache.

Been having LOTS of that ill feeling, as well. There is no readily apparent reason for the uptick of its intensity; it just has. Coupled with the headache, it's no wonder I've been dragging all day...every day.

The bilateral flank pain has increased as well. No huge pangs, but lots of positional flare-ups. Plus, sitting in anything in a straight up position has also resulted in a lot of tenderness over both kidneys. This is happening in both regular and soft-backed chairs such as my recliner. I've even had that tenderness happen while laying in bed.

My sleep has continued to be lousy, unpredictable and un-restful. LOTS and LOTS of exhaustion all day, every day. A few days ago I was out helping with grocery shopping. I had decided to walk (rather than get a motorized cart). I was doing ok for most of the time until I suddenly, literally felt my energy level drain completely away. One minute I was good, and the next I could barely walk. I have never experienced such an energy drain before; and I didn't like it! I had just enough energy to get back to the car, then into the house, and spent the rest of the day just sitting...completely exhausted. I don't think I moved hardly at all until I went to bed.

My eyesight continues to go from good to bad depending on how I feel from day to day. One of the appointments I'll be making is with an opthamologist (not an optometrist), because an opthamologist will be able to work with my ocular divergence, a rare condition which involves the muscles of the eyes not holding the eyes in proper alignment when reading, leading to muscular strain and increased incidences of headaches. I already have glasses for reading which I am using right now, in fact, as I type. Anyhow, the opthamologist will be able to differentiate between the signs between divergence and deteriorating eyesight, and provide a prescription that will aid both--assuming my corneal/lens focus is actually deteriorating and not merely trying to adapt to what's happening throughout my body because of the failing kidneys.

I've gotten fully used to the increased ammonia odors coming from my breath. I still notice when it gets worse that the current level; but most of the time [now] I don't pay attention to it. On the other hand, my breath has taken a severe turn for the worse. I can't even describe my breath right now aside from saying it can be terribly 'foul.' It grosses me out when I smell it. Brushing my teeth hasn't helped it much, nor have the cinnamon Altoids. 
So I'm going to try using a mouthwash several times each day. That should start sometime next week. I'll let you know how it goes.

My urinary characteristics are little changed since my last report on this. Still no obvious kidney stones, no obvious blood. Color, foaminess, clarity, etc have all been consistent. Nothing to be alarmed about at this time.

I've taken a week's worth of the new med Zemplar, and haven't had any noticeable side effects. These may be more cumulative than sudden, and I likely won't be the one to notice the neurological changes--I'll depend on others to point them out.

The level of edema continues to be unpredictable. I haven't had a severe edemic increase in some time. Instead, I have a constant level that never really decreases, and have moderate swelling on top of that. The pattern of development and loss is always the same, though. The only real change in this area is that my hands have been swelling with more consistency than anytime previous. I haven't noticed it in my arms; just in the hands.
In fact, today my hands feel and look swollen with obvious edemic increase.

As I do every once in a while, I was taking a good look at myself in the mirror to note any obvious physical changes. This time I noticed that my face is thinning out a lot. My muscle mass is quickly disappearing. My legs are the thinnest they've been in decades, as is my upper torso.
The only reason my midsection is larger is because of the two hernias that developed early in the explosion of disease S/S's that began about two months after diagnosis. Hernias happen in a number of PCKD patients, and must be repaired prior to transplantation consideration; which means, I get to have both repaired in the near future.

That's all I can remember for today. As I always do, I'm hoping for a better week ahead. I know...that likely won't happen; but one can hope, right? Have a great week!

Good Health to All!

ScottW