All I do in this journal is complain... LOL Oh, well, I doubt anyone could find anything good to brag about when it comes to kidney failure. My body is so out of whack. This cold I've had for the last week is not going away and not really getting better. It keeps moving to different places - first in my throat, then in my head, down into my chest and back up into my head... where it has now taken up residence in my sinuses. I have that awful "my-heads-going-to-explode-with-snot" pressure, complete with "I blow-nose-for-hours-and-nothing-happens." Lovely. I also occasionally hack up a lung, but only occasionally. My blood pressure is back up again - could be a combination of the cold medicine, the constant headache, dehydration, dialysis, stress, not paying enough homage to the gods, the stars aligned incorrectly... who knows! I give up trying to figure it out. When its this high and I'm physically uncomfortable I take a Norvasc in addition to my usual Lisenopril. As previously documented I'm super sensitive to even slightly high blood pressure and it makes me go nuts until it comes down. I was only .3 kilos over my dry weight at dialysis this morning (hardly any for it to be a Monday) but I knew I was in for a drag through crap and back. There is nothing worse than being sick and having to sit at dialysis. Did I also mention how impossible it is to try to blow your nose using one hand? I'm sure for those who were watching it made me look quite attractive...

Aside from the teacher at my son's school, I haven't had anyone else (i.e. a complete stranger) say anything about my arm... until tonight. I went to Staples to buy some office supplies. The checkout kid in my line looked to be about 16 or so (judging by the pimples and greasy hair.) He did a double take looking at my arm and asked me what had happened to my arm. Honestly, he wasn't impolite, which I thought well of. I could tell he thought I'd been in some horrible accident that maimed my arm to hell. How does one explain exactly what a fistula is, or is used for, when the general population has never even heard of "dialysis" or "kidney failure"? There aren't even simple enough words... The look of horror and then pity, followed by that "I-feel-really-uncomfortable-right-now-can-you-just-leave" look crossed his face in about 5 seconds flat. I felt really bad for the poor kid because he looked obviously embarrassed when he realized what he'd just asked me. I kind of laughed and said "Hey, its really not as bad as it looks" and left with my stuff.

I've been asked to write an article for the AAKP (American Association of Kidney Patients) September issue of RENALIFE. How cool is that?!

If it weren't already bad enough, now I have a cold. Darn it :P

I feel as though all I do now is pop pills. Pills for blood pressure, muscle cramps, sleeping aides and night-time leg twitches. Vitamins, phosphorous binders and diuretics to make my kidneys squeeze out the little bit they do. More pills for pain when my arm is hurting and for the migraine headaches I have more and more frequently. My whole life has turned into eating pills... and, when I say 'eating' I really feel this is what I do. Oh how I would give up all the pills in a heartbeat, if I could! I marvel at 'normal' people who can simply go to the store to buy Tylenol for the occasional use, while I sit back and perfect my technique at swallowing as many (pills) at a time without gagging. Sometimes I actually wonder about what life would be like without all the pills. Could I really live without them if I suddenly didn't need to take any? I feel as though I have some sort of emotional attachment to the ritual of opening each bottle, selecting a pill and swallowing them down. I can't remember when I didn't have to take a handful of pills evey day. How disturbing - I think I must qualify as some special kind of drug addict. I wonder when my liver will give out, too.

A week has passed and here I am again apologizing for no updates! Things are "going" and that's about it. I finally conceded to upping my dry weight from 46.5 to 47 kilos (that's 103.6 pounds for the rest of you) and I've had one treatment @ 47. It went well, but, only the stars know if the next one will. I'm skipping my treatment on Friday and will have one on Saturday, instead. My son's school is closed Friday so I'm going to hang out with him at home. I'm going to the AAKP Annual Convention from September 2-5 in Bal Harbour, Florida. Anyone else attending?

Lots of you have been emailing me, asking how I'm doing. I guess this means its time for an update... I've been bad about updating regularly. Things really haven't changed. I'm getting discouraged by the lack of consistency in my treatments. I've tried everything I can think of to predict a 'good' treatment from a 'bad'. Mondays are almost always 'bad' and Fridays are almost always 'good' (or I should say "easier"...) I watch my fluids, I go light on the sodium, I eat as much protein as I can stand (I'm not a big meat eater to begin with so this is a challenge.) I've tried changing my dry weight by .5 kilos each way - 46.5 kilos seems to be DRY without cramps, 47 kilos seems to be too much and I end up with swelling in my legs before my next treatment. My kidneys seem to work best right after treatments - as soon as I get the saline rinse-back I have to pee within an hour. So, when I come off at 46.5 kilos I have to drink a glass of water right after treatment or my weight actually drops quite dramatically (down to 46 kilos sometimes) causing nausea, headaches, etc. The other weird thing has been in my changing to the early morning shift. If I go into my treatment @ 48 kilos (1.5 kilos on), add in the rinse back (.4 to .5 kilos depending on the tech) to take off a total of 1.9 - 2.0 kilos, I should come out right at 46.5 kilos, my established dry weight. However, I oftentimes end up at 46.2... where do those .3 kilos go? They just disappear? This didn't happen when I was on the afternoon shift and it doesn't make any sense to me or anyone else. I've also tried eating and not eating before, during and right after treatments. This seems to have little effect on the outcome of the actual treatment. Obviously my fluid intake during a treatment would have a slight effect, so I hardly ever drink more than a sip or two of water while on the machine. I'm seriously considering home hemodialysis either on a short-daily schedule or a regular 3x per week treatment plan. I've been put in contact with a company that has a few home-hemo patients in this area (there aren't many) and have been finding out the details. Ken and I have some things to discuss before we go installing a giant dialysis machine + plumbing directly into our lives. And, I have to think a little longer about the impact it might have on my son. I keep wondering if this is the way it will be FOREVER. Its almost like thinking of infinity - my mind just can't grasp it. I'm still hopeful that it will start getting easier and things will level out...

Here's a picture of my fistula...

Its only Friday and I'm super thirsty. I've been drinking more than I know I should... and I have a whole weekend to get through! Ugh!! Everyone pray to the pee gods that the Torsemide (daily diuretic I take) will work efficiently!

Today I got a lot accomplished - As much as I hate Mondays, I love Tuesdays. I took care of sending in my SSI (disability) income report for April. Not like I made much - I only worked 2 weeks and about 10 hours total. That should be the last time (hopefully) that I have to report SSI - My 'regular' disability should be kicking in any time now *crosses fingers*. I don't know how Social Security expects someone to live on $500 per month in a state with no state disability insurance... Because I'm on SSI the State of Florida automatically enrolled me in Medicaid. I'm not exactly sure why, because I have both private insurance and Medicare so, it would seem that I wouldn't need Medicaid. I pondered as to how long I would retain my eligibility but, no one at all 3 numbers I called could give me a definitive answer. I guess I'll use it until they tell me I can't any more (heck, having too much insurance is better than having too little). *shrug* I also stopped by my dialysis unit to give them copies of my Medicare and Medicaid cards. The unit recently went from 3 days per week to 6 days per week, so Tues and Thurs are quiet with only a few patients. The charge nurse convinced me to sit down and talk for awhile, so I ended up being there for about an hour. Its nice to be a 'normal' person, once in awhile... On Friday we have an AAKP fund raiser 'celebrity lunch' in Ybor City. It starts at 11 AM so I'll have to hope for a great treatment and a lot of hustle to get there within a reasonable amount of time. Want to know more about my day? (the normal parts...) Read Another Tuesday - Part 2 in my regular journal :)