03 July 10

The last five days [since my last entry] have been miserable.

I don't know what has changed (or why), but I have been feeling almost exactly as I had described in my 28 June entry. My headache has been almost uncontrollable 24/7. My mid-back pain (over the kidneys) has been painful 24/7. The nausea has been almost non-stop 24/7. My appetite has been literally next to nothing for a week now, and the diarrhea is intermittent. The ammonia I smell is stronger, and it is putting a rather foul taste in my mouth all day, every day. I am more tired than ever; even after a good night of sleep. I am mostly sitting at home because I don't have the strength or energy to go out and about.

What a week.

I don't know if how I feel is normal, or *atypical for PCKD patients. I haven't read anything that insinuates "normal" as far as how patients feel day to day. Knowing my body, I am most likely *atypical from most patients; but that is merely an assumption on my part.

My urine flow remains at its now normal volume. No further decreases. The edema in my legs seems to be static for now. Though my legs and feet itch from time to time, I don't see any visible increases in the edema.

Remember a few months ago when I was telling you about my hair? I had my haircut this past Wednesday, and my longtime hairdresser states that my once wavy hair is now straight. I'm not losing any, mind you; and it's as thick as ever...but the curl/waviness I've had my entire life is suddenly gone. I can only attribute this to either the meds, the disease, or both. Genetic history tells me I should have thick, wavy hair until the day die (in my 90's, I hope). So, this is definitely odd.

I've noticed that when I eat (well, in those rare times I actually have a "meal") that I am growing increasingly sensitive to the taste of salt. I've already had a decreased sodium intake for about 35 years. One day, as a teenager, I decided to see what food tasted like without adding salt to it; and I liked it! So, aside from french fries (my one and only salt indulgence), I haven't added salt to anything in 3.5 decades. Anyway, as the disease has progressed, I can taste even small amounts of salt that are naturally in most foods. This is making a lot of foods unappetizing.

Well, that's all I've got for today.

I hope all of you, my readers, have a fun, safe, and completely enjoyable Independence Day celebration!

Good Health to All!

ScottW

*Atypical: "Unusual from an established norm."