So today I started my first dose of Cozaar (angiotensin II receptor antagonist). So far I feel a little sleepy and slowed down, but no dizzyness. My doctor told me to get a blood pressure monitor (digital automatic kind) in case my blood pressure drops too low. I've already been on Zestril (ACE inhibitor) for five years so my blood pressure is normal due to that. This new one isn't for my blood pressure, but rather, for the potential nephrologic benefit to my kidneys. I still haven't quite figured it out although I've been reading more about it today. The sodium bicarbionate they put me on last week is a fairly boring drug. No side effects and no noticeable improvements anywhere (other than in lab tests, of course). Its the kind of drug I hate to take and often forget about - there is no immediate adverse effects for taking it or not so I tend to rebel and not take it on purpose. Argh, I'm trying to be good but this taking drugs three times a day thing just cramps my style. In other news... my staph infection is back. :( This time its not nearly as bad, but it started to get painful at the end of last week. I marched myself right back to the doctor. Apparently the dose of antibiotics they gave me at the beginning of November wasn't a high enough dose to kill the bug completely. Normally (for someone who is healthy) they prescribe 500 mg twice daily for 10 - 14 days. For me I was only able to take 250 mgs twice daily for 14 days. Although the bumps went away completely for about 3.5 - 4 weeks they slowly started coming back again. So now I'm back on Cypro (antibiotic) but this time I'm taking 250 mgs twice daily for 3 weeks. The bumps are disappearing again so I know the medicine is working. With all these drugs in my system I worry about my liver. The doctor did bloodwork for my liver and nothing came out abnormal. This should put my mind at ease, I suppose, but I'm a skeptic.

I finally went to the doctor today after waiting way too long. I saw my regular doc (the new kidney doc appointment is in 10 days) for a skin rash I've had on and off since May. This isn't the first time I've had it but this is the first time that it wouldn't go away on it's own. I've always called them my "stress bumps". Every time I encounter a huge amount of stress in my life, I break out all over, with these little fluid-filled bumps. It takes about 2 weeks after the stressful event(s) before the bumps appear and then they usually last about 6 weeks before going away. This occurs once every 15 - 18 months and it taks a LOT of stress to bring it on. The bumps themselves resemble infected pimples, but upon feeling one, it's almost as if there is a hard marble under my skin. The pain is enormous. To touch one is torture, to lie or sit on one is unbearable. They don't come all at once - I get a rash of them, and as those start to fade and heal, one or two new ones will break out at a time. This time I got the bumps as a result of 3 major events happening in my life in one week - going to court to finalize my divorce, buying a car and sending my son off to visit his father (alone) for 6 weeks. Throughout May, June and July I had bumps all over - the ones on my stomach were so bad they scarred. Ken begged me to go to the doctor but I just kept hoping they would go away. Of course they didn't this time. Finally in August they seemed to be clearing up - no new ones were breaking out and the old ones were healing. Then, I moved to my new apartment. Along with that, another huge amount of uncontrolled stress... two weeks later, a big breakout of new bumps. Since I had to take my son to his doctor this morning to check out his rash (how ironic - he just had a reaction to some bug bites as it turns out) I decided to take myself to the doctor, also. The doctor isn't sure exactly *what* these bumps are, but she is sure they aren't shingles (which is what I thought they might be based on the pain). She thinks maybe it's some sort of reaction from my failing kidneys or something tied into that. As a temporary fix, until I see the new kidney doc a week from Friday, she put me on Prednizone to try and reduce the inflammation. As I said in this LJ comment a few days ago I swore I would NEVER take this drug again. Because I have no other option, and because the doc doesn't know what my "stress bumps" are, I agreed to take it - but in a low dose (40 mg/day) for a short period of time (5 days). Obviously this dose is no where near the high-level doses I was taking in 1995 when it was being used to treat my kidney disease. I'm just hoping it will help and with little or no side-effects. She also put me on some high potency antibiotics. I'm crossing my fingers and hoping this will work. These stupid bumps are a big pain in the ass and I really hate having to go to the doctor for something that seems so minor to me.

Today was a really hard day... I'm in so much pain from these stupid boils/hives/rash/bumps (whatever) and of course when I went to the dermatologist I got poked and prodded which made them hurt more. The bottom line is, the dermatologist has no clue what they are - in order to find out, they did a biopsy (whacked off a huge chunk of skin containing a bump) and I'm supposed to come back in 10 days. They put me back on Prednizone and another antibiotic again. At least they were kind enough to give me a prescription for the pain - Darvocet. I don't like it, because although it makes me feel nice and high, it does absolutely nothing for the pain. After the dermatologist appointment, I had an appointment with my kidney doc. No real surprises there. I have to start getting the Procrit (Epogin) injections for my anemia, but before that can happen, I've got to get my iron levels up. In order to do *that* I've got to go sit for 3 hours at the cancer center and have an intravenous drip of iron. I'll probably have to do it once a week for several weeks while starting the Procrit. What a drag. The only good news was that my calcium levels have improved significantly - enough so that I'm now within a "normal" range. My kidney function (as verified with the 12 hour urine collection I did a few days ago) shows that I'm somewhere around 33% function - much higher than we thought previously. Every precentage point counts! After the doctors' appointments I came home and slept for about 3.5 hours. I'm exhausted, still. I really hate having these low days - they're so much NOT like "me". I just want to feel better, all around, so I can LIVE my life. In other medical news... I found out that my aunt has bone cancer. My mom is worried about her and worried about how my grandmother will take it. So, I'm thinking a lot about that, too. Ken was wonderful today - he didn't make me feel bad when I cried in the shower because I HURT all over. He didn't hold it against me that I felt too bad to get up and get my own glass of water. He gave me kisses all over my face and told me everything would be OK. He even drove me to pick up Alek at daycare this evening and went to the pharmacy and bank with me on the way back. Everyone should have a Ken. :)

Sometimes I feel like my life isn't really my life anymore. It feels more and more beyond my control every day. < pity party > At the doctor on Friday I was prescribed another new drug. This one is supposed to help with the amount of protein I am losing in my urine and also help sustain the kidney function I still have. It is a drug in the blood-pressure-regulating category. Although my blood pressure is 100% controlled with the ACE inhibitor I've been on for the last 5 years, this one is a different kind which will hopefully do wonderous things for me. I have to buy a blood pressure cuff to take my own blood pressure every day to make sure it doesn't go too low. Additionally, my doctor is really insisting on putting me back on immunosuppressants. Either Cyclosporine (which I've been on 3 times before) or a new one I've never been on called CelCept. They both have nasty side effects - besides making one prone to every germ floating around, they also make the stomach angry. I don't usually do well with immunosuppressive thearpy - I end up getting sick with one infection after another and/or throwing up all the time to the point of losing a lot of weight. The 'good' side-effects are very minimal. A lot to consider - prolong the life of my kidneys *slightly* while living in stomach-upset misery, or have fun while I can without the side effects? Then, today, the doctor's office called to say I also need to start taking Sodium Bicarbonate 3 times a day. You might know this drug as "AlkaSeltzer" but for me it will help bring down the acidity in my body, restore normal C02 levels and bring my now "critically high" potassium level down. Lovely. So this means I will now be taking drugs 3 times a day, in addition to weekly shots. I just hate putting all this crap into my body. I wonder just how much good its really doing... < /pity party > Ok, I'm done complaining now. :) Please resume your regular LJ reading...

OK. We all know I have a kidney disease and that my kidneys are slowly failing. What I find fascinating, that I have spent time examining and analyzing since just about day one with this disease, are the strange properties of my urine. First of all, I lose so much protein in my urine that you can actually see it in my pee. The protein looks like tiny clumps of crystals (think the flavor crystals in Cinna-Burst Gum) floating around. When there is more than usual, my urine is very frothy, too. Additionally, as my kidneys worsen, the color of my urine gets lighter and lighter. To me it is quite disconcerning that my pee now resembles water more than it resembles pee. It is only the faintest of yellow color... Ok, well. That being said, I hope I didn't gross anyone out. And if I did, then you shouldn't have read the cut to begin with!!!

I feel much better this afternoon. I went home for a couple of hours this morning and took a nap until the nausea passed. Woke up and ate some toast and felt much better. I've just got to learn that when I wake up with an upset stomach it's NOT A GOOD IDEA to take my morning medicine on an EMPTY UPSET STOMACH. :) You would think I'd have this down by now... LOL

My stomach hurts. :(

Was my day off, but I ended up going to work for a little bit anyway. Before I went to work, Ken and I went to my doctor's office this morning and they trained him on how to give me the Procrit shot. Before he gave it to me, the nurse made him practice for 20 minutes on a little sponge using some saline. He perfected the technique in about 2 minutes but had to practice (to stave off boredom) for a little while until the nurse came back to check on us. I was quite impressed - he went through every step each time, even the alchol rub, to make sure he had it correct. We joked about the "dart" techique of sticking the needle in... maybe we should draw a bullseye on the target? (he'd love that... he'd probably put the 'target' right on my tushy) Finally the nurse came back in and asked if we were ready. Ken was very sweet about the whole thing, even though I got the giggles and his hands were shaking when he was trying to give it to me. It didn't even hurt and he did a great job! He said later he was worried about pushing it in too hard or too soft and had been concentrating on the exact amount of pressure needed. Now I won't have to worry about going to the doctor's office every week for the shot - Ken can just stab me for kicks and giggles. Someday soon I'll learn how to do it myself, when I'm ready.

I feel GREAT today!

I went back to the dermatologist this morning for the results of the tests they did last week to determine what my skin problem was. I have MRSA - Methicillin Resistant Staphylococcus aureus a.k.a. a Staph infection. No wonder its been going on so long and I couldn't make it go away. "Methicillin resistant" refers to the fact that this particular strain of staph is resistant to penicillin antibiotics and will require me to be on some pretty strong other medicines for a few weeks to get rid of it completely. I most likely got this infection for 2 reasons - first, because Alek had the same infection, in the form of an ear infection, around the end of April. Secondly, because I have a compromised immune system and am more prone to infections of all types. In April Alek's doctor determined that he most likely got it from some other child at his daycare. After 2 weeks of antibiotics he was fine. Right around the same time (beginning of May) was when I first started having problems with my skin. Initially I think the "outbreak" of boils/hives/bumps were my normal high-stress bumps that I often get when I'm under too much pressure. After that, they got infected with the staph and didn't go away. So now I know. Hey, families are supposed to share everything, right? Even germies :)