September 24, 2004
Playing Catch Up - An 8 Week Overview


Well, it's been a while....did shot #8 last night, so here's where I stand (or lie down, LOL) at this point....

How am I doing? Not well, and getting worse by the week, although I'm getting used to it. I have a wide array of side effects I'm learning to live with and work around, some of which come and go, and some of which are constant companions. I am always exhausted and disoriented - my attention span, thought processes and reaction times leave much to be desired, I frequently can't find the words I'm looking for, and have a marked tendency to forget where I was planning to go (not to mention how to get there) when I get in the car, I always have a headache somewhere around 4 or 5 on a scale of 10, have a constant fever between 99.5 and 100.5 (which frequently spikes up to over 101, and sometimes hits 102), have a nasty metallic taste in my mouth, throbbing aches in my fingers, wrists, elbows, hips and ankles and muscle aches in my shoulders, lower back and legs....at this point, all of the above are simply "givens", they slow me down and wear me down, but if they're all I'm going through, then I consider it a "good" day.

And then there are the "ungood" days, which generally equal the good ones most weeks.....the days when the mind-numbing, bone-crushing, soul-sucking fatigue hits, when I barely have the energy to sit up, let alone get up, and any movement feels like I'm working my way through wet cement, when staring at the wall is about the height of my comprehensive abilities, and all I can do is lie there and wish I could sleep, except that with the fatigue comes insomnia (interesting, albeit somewhat wearing, combination, that), when I'm reasonably certain that there are dead people out there with more energy and mental acumen than I have.....the days when the brain fog is so thick I could probly see it around my head if I had the energy to open my eyes, when thought (coherent or incoherent) isn't an option, and I just give in to complete and utter stupidity....when the headache hits 12 on a 10 scale, and the body aches go from a dull throb to hot metal stabbing everywhere....when the nausea hits and I'm afraid to throw up because it might start something bleeding....these are the days when I'm ready to give up, when life looms ahead of me as just endless months of more of the same, with no hope of any better future in sight.

There are odds and ends of other side effects....my hair is getting thinner, although at least it's not falling out in clumps (at least not yet, LOL, that should start in another month)....the mood swings are actually calming down some (I think I'm too tired to go from euphoria to the depths of despair on a regular basis, it's easier to just maintain a constant state of "blah" :-P)....my sex drive has completely disappeared, which is probly just as well, since I think I'm too brain fogged to remember how to do it, LOL....but the one good side effect is that I've lost weight (about 25 lbs so far) to the point that I'm having to dig out clothes I haven't been able to fit into in years (good thing I spend most of my time in PJs and sleepy T-shirts, since I don't have much energy to dig), I actually have cheekbones and a waistline and hipbones - and lucky I have hipbones, they're the only things that keep some of my pants from falling down, the jeans I filled quite substantially by myself this past January are roomy enough now that someone else could probly fit in there along with me, LOL! ;-P Of course, the downside is that I'm still losing weight - not eating much at all, nothing much appeals - while I'm not having constant nausea, it comes often enough and unexpectedly enough that I'm always sort of looking over my shoulder for it, and the metallic "meds taste" throws the flavor off everything....it's hard to work up much enthusiasm for eating when you know it's going to taste funny and may not even stay down. I figure if I keep losing at this rate, I'll be a perfect model for a "Feed the Hungry" ad campaign for the holidays, LOL!



The main worry the doctors have is over my platelets, which are extremely low, and dropping with every shot (normal is about 400K, dangerously low is 150K, mine are at 47K as of Sept 1), which puts me at severe risk for internal bleeding (which could start spontaneously or be brought on by a bad bruise), and also not being able to clot should I cut myself....needless to say, I try not to bump into things and don't use sharp knives except when absolutely necessary - and keep hoping I'm not in a car wreck, LOL! I'm taking Vitamin K, which is alleged to help with the clotting function, so while it won't raise the platelet count, it may keep some bleeding from occurring - but as with most herbs and vitamins, there's no real proof it works, although as my doc says, it can't hurt and it's worth a try. Otherwise, there's nothing they can do medically about it unless bleeding actually starts, in which case they can hospitalize me and give me platelet transfusions and hope that stops it....but transfusions won't help to simply raise the platelet count, since my spleen and the meds will just destroy the extras within a day or two. So I suppose if any of this is going to kill me, it'll be the platelets....and it would probly be a fitting end to my life to go through all this and then bleed to death from a paper cut! :-P I made arrangements with some friends that if anything does happen to me, they'll take Boo....both Boo and their son are very enthusiastic about the idea of being big brother/lil sister, although I pointed out that I was not going to die just to gratify their desire for siblings....however, it wouldn't surprise me if they hatch a plot to hasten my death ;-P - "I know, we'll play the opening bars of "Smoke on the Water" over and over on our electric guitars til her ears start to bleed", LOL!



I think the worst part is the "aloneness" of it, and the complete lack of help....trying to maintain some semblance of normalcy for Boo's sake, trying to keep on taking care of Mama for as long as possible, trying to find the energy and brain cells to shop and clean and drive and pay bills and take care of life when all I really want to do is crawl into bed for the duration. Kerry has been coming down on Fridays for a few hours when she can, to at least make sure I eat, but her job goes back to full time next month, so even that will be ending in a couple weeks. I don't expect much help from Boo - she's too busy being 12 (which is what I want for her), although she does clean the TV room and vacuum downstairs every week without TOOOOOOO much argument.....her main concessions to "hey, maybe Mom really is sick" are to accept the fact that we're going to live off microwave dinners for the next year (and she'll have to microwave her own) and to only have one friend in the house at a time to "keep it quiet for Mom" - although I suspect the last is more a ploy to keep Zahra's little brother out than an actual show of consideration for me, LOL!

My brother and sister are in complete denial that I'm sick at all, apparently deciding to go with the theory that if you ignore the elephant in the living room long enough, it will get bored and go away, although in this case, the elephant has made itself to home and has no intention of going anywhere for at least another 40 weeks.....they don't even ask how I'm doing, let alone if there's anything they can do to help - and in fact, act quite put out that I can't rearrange my med schedule at the drop of a hat for their convenience, and that I'm starting to have "extra" days now and then that I'm simply too fatigued/sick/hurting to get out of bed and drive to Mama's, let alone take care of her when I get there (although I told them months ago that this was likely to happen). I'm curious to see what will happen when Muff wants to go out of town and/or Albert wants to go hunting, and I say "Sorry folks, but there's no way I can cover it".....I suppose I will be thought selfish and unaccommodating, and maybe I am - but given that there's no one else to take care of me, I have to take care of myself as best I can - and I'm real sorry if it inconveniences them, but it's not like it's exactly a day at the beach for me either. :-P



I just plod along - I'm trying to streamline and cut out doing anything that doesn't absolutely have to be done, and what's left I'll do for as long as I can, and when I get to where I can't, I guess I'll figure out some other way to get it all done - or maybe just stop doing anything at all, LOL! I don't have much faith in "the Lord will provide" at this point - all He's "provided" for the last 8 months has been one calamity after another, so I don't put any stock in the idea that He's suddenly going to do an about face and make everything all better....I don't pray anymore, He's going to do whatever He wants, and it seems a waste of precious energy to try and bring Him around to my point of view - at the moment all I really want to do is avoid His notice altogether, just in case He's reminded of some new catastrophe He was planning on throwing at me! ;-P

So, life (or a sort of facsimile thereof) goes on, one day at a time....some days are better than others, and some days just flat suck....I'm sick of being tired, and tired of being sick, and HATE feeling so damn dull all the time, but I still manage to find things to laugh at, even if it's my own inability to finish a sentence, LOL! (And I can certainly sympathize better with Mama, LOL - I've got that lil "oh, you know" hand flap down! ;-P) Given my current lack of brain power, this came out a lot more coherent than I would have thought possible....although it did take almost 3 weeks and a great deal of revising to get it to resemble anything approaching my usual style, LOL!

Well, for what it's worth, this is where I am - at least for now....in another couple weeks I'll enter a new "phase" (seems to run in 8 to 12 week cycles) and some of the sides will get better and some will get worse, and some will disappear completely only to be replaced by a whole new set of fascinating brain and body disfunctions, LOL - ah yes, the HepC tx experience, a never-ending cavalcade of fun! :-P



Week 8 - September 23-24, 2004



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