I'm considering having my website MyKidney.com professionally overhauled. I've been thinking about it for awhile, and I've just not gotten around to doing anything about it. I think I've found a really good designer who can accomplish what I'm looking for. My site needs to be just enough professional that it accomplishes a purpose and just enough personal to reach out to other patients. Something fun and upbeat while being organized and easier to navigate.
As updates go, I have't been good about them, lately. I have a good excuse... I really, really do! I've been tired. What? That's not a good enough excuse? Bah. It should be, I swear! I talked with my doctor today and told him I've been soooo tired. I sleep a lot, yet, I wake up feeling as though I haven't slept at all. He explained to me that the Klonopin I take for Restless Leg Syndrome suppresses REM sleep. Well, there ya go. So he gave me a script for Ambien to try for a couple of weeks to see if it helps. I'm going to try to stop taking the Klonopin, too, and see what happens with the RLS - maybe it'll go away? I'm hoping so... I'll shortly be trying it out. My treatments have been going mostly OK. Some are good and some aren't so good. Mostly, they are just OK. I think being tired is effecting me more than I'd like to admit - including exhausting me further after I'm off the machine. I've been managing to "sort of" sleep about 2 hours of my 3 hour treatment so that helps pass the time. My labs are good - Kt/V 1.91, Hematocrit 44 (yikes!), Phosphorus 3.6, Potassium 4.6... even my protein has started to come up for the first time in YEARS... its 5.8 (still low, but improved!) The doc asked me if I wanted to reduce my treatment time again, but I told him I'm fine where I'm at. I don't really want my Kt/V to be lower. I finally got around to applying for Medicare and Social Security Disability. The Medicare is supposed to kick in this month, the SSD won't start until July or Aug. Speaking of Medicare... I have yet to get one bill from DaVita for my treatments. I hope my insurance (Tricare = Humana = Continued Care Benefits Program = COBRA) isn't giving anyone a difficult time. There is one thing I'm concerned about. I'm continuing to loose weight. I'm seriously down around 100 pounds if I weigh myself late in the day, after a treatment and before I've eaten. My 'official' dry weight is 47 kilos (103.6 pounds) but my *actual* dry weight is 46.4 (102 pounds). That's just too low for my comfort zone so I'm trying to (struggling to) do something about it. I'm just not motivated to eat... I'm not hungry often. I think a lot of it has to do with being tired, too. Today I asked Ken to try to help me remember to eat and to encourage me to get some exercise, too. Sleep, good food and exercise should help... I'm hoping. A lot of times I have so much to say... but when confronted with my journal, I forget all about them. Maybe I'll start using the phone-post feature....
... have all been entered from my