Slept the Day Away

Last night I went out for dinner. I had eggs, hash browns and toast. It wasn't the best meal, I know, but that's what I wanted. These days, I pretty much eat what I want -- which is healthy most of the time. When I splurge though, I go all out. When I came home, I sat on the couch until I started to feel sick. It came on suddenly and I just got up and went to bed immediately. I didn't brush my teeth or wash my face. I just got up and went to bed. I don't know if it was something in the food or if I was just done for the day, due to the emotion and the longness of the week, but I was done. I felt sick to my stomach. I felt extremely tired. It must have been 10:30 pm. I just woke up about 10 minutes ago (11:30 am.) Sleeping solid the entire night and morning.

Now this morning I have some UTI symptoms. Maybe I have an infection. If it lasts until Monday, I'll call the doctor. Until then, I'll drink lots and lots of water to try to wash it away. Sometimes that works.

When I'm sick, I start to feel very close to my husband and my cats. I don't know why that is, but it's interesting. I think I'll take a shower and get cleaned up. I feel gross, but rested. lol. Then I can get a pedicure and a leg wax. Maybe I will go away for a few days to a spa. My husband said to go for it.

Mixed Up

Wow, are things messed up today. I should be prepared for it by now. I was up up up yesterday and it just figures I'd dip down a bit today. Things can't stay up all the time. I just wish the highs would last longer than they do. I've been battling it this afternoon -- the grumps. I find myself lying to people about how I feel. I don't know why I do that. I guess I want to portray of picture of health and happiness which is not so unusual, but there also is nothing wrong with feeling bla. One minute I want to put my running shoes on and run for miles and miles...the next I want to get more work done...work hard and keep busy....yet another minute later I want to get a pedicure...anything except go home and sit on the couch in that house. I have this desire to be completely alone for a few days. Maybe leave town for a while and just be alone. I'm not usually like that and I don't quite understand where it's coming from.

The best I can do is to go to the gym and be alone with that crowd of people working out. Or stay at work in my office, but I want to be outside. Go for a walk maybe or ride my bike, but just be alone and think.

The transplant coordinator emailed me yesterday to say that we'd finish up the crossmatch after the July 4th holiday. My cousin will mail her blood overnight Monday the 9th. I'll give blood on July 10th and the crossmatch will be done that week. We should know Thursday or Friday. I'm a little irritated that this didn't happen this week. There's really no reason why it couldn't have been done this week. I was here Tuesday (yesterday), but the coordinator didn't even consider it. And since next week has 7/4 in the middle of the week, we apparently can't to the crossmatch over that day. I guess nobody's in the lab on July 4? Who fucking knows. In any case, I know that I have time, but I just don't like not knowing.

The next question is when I'll get the transplant. Oh, hell, I wish I knew.

Kicking the World's Ass Today

That's just how I feel today. Damn. I feel good and strong. Never better, honestly. I'm headed to the gym tonight. The conference was pretty good. I guess it energized me. I have been feelilng bad, depressed, negative, but I think things have changed. I'm feeling good and I want to be positive and enjoy life.

Back Pain and Telling

That's my latest symptom. It doesn't bother me much, but today, on a plane (returning from a conference) it was persistent. It's a dull aching pain, but I have had shooting pain in the past. Overall, it's not that bad. If it goes on for long, however, I do get irritated. By the time I got to baggage claim, it was nearly gone. maybe it was the 4.5 hours of sitting?

Otherwise, I had to tell a few people about the upcoming transplant. I was planning to take over some chair duties on a committee, but I don't think it would be right to do that and then miss 2+ months of work during the year. People are pretty darn cool when they hear about it. I think it's most interesting to see how they react. Usually the older people react more thoughtfully and the younger ones (under 40) are kind of chill. Like maybe it isn't very real to them -- I suppose they just aren't old enough to have experienced health problems or people around them with health problems. I wonder sometimes if I should be telling people at all. Maybe I should just keep quiet about it. It probably makes them uncomfortable, and sometimes I feel like they might think I'm looking for attention. I try to influence their reactions with a lighthearted comment and maybe even a joke about it, but that probably makes them uncomfortable, too. The reason I say anything is that 1) they need to know that I'll be absent for some time from the professional world and 2) I think it's better for all transplant patients to talk about it because more people need to see us as survivors. Especially PKD. It's so prevalent and yet people don't know about it! Also, they need to know that they could save a life by donating a kidney. Imagine if only 1 of all of the people I talk to about kidney transplant gives a kidney? What if I tell more and more people and 2 decide to donate a kidney? Maybe I can make a difference. Here is some information from the PKD Cure website:

"Autosomal dominant polycystic kidney disease (ADPKD) is one of the most common, life-threatening genetic diseases, effecting 600,000 Americans and 12.5 million people, worldwide. ADPKD affects more people than Down syndrome, cystic fibrosis, muscular dystrophy and sickle cell anemia combined."

Feeling Sick

I started to actually feel sick yesterday. First off, I'm really run down even though I'm getting pretty much the same amount of sleep. But more importantly, I am finding it's difficult to think. It's like my brain is really tired all the time. I have to ask people to repeat things because I just don't understand them the first time -- sometimes the second. Also, I get frustrated easily. Today I woke up with symptoms of a urinary track infection. I should call the doctor's office, but I don't want to go in and give a sample. I have some Cipro in the cupboard that I'm considering taking to treat myself. This is what the nephrologist usually gives me so it's not terrible to take it on my own. I guess I signed a piece of paper that said I'd notify the transplant center if there were any "changes in my health." Does this count? Hell, they probably want to know that if I am waiting on the transplant list. I'm gonna get a live donor though so it's less important. I feel like doody. Maybe I'll feel better after a while.

I've been having trouble sleeping. I've been nauseous on and off. I've even noticed that I'm losing my appetite.

**I just realized I left my frozen dinner in the hot car.** hmmmm, what to do....

I asked the transplant coordinator to call me back at work and she calls me at home. I asked her to leave me a message w/ the actual information, but she says "call me back" instead. My prospective donor is in touch with the same coordinator and I get just about 1/2 of my information through her.

I have to say, yesterday was the longest Monday on record. I'm tired. I want to go home, but I have 2 meetings today. Three of the 6 team members can't attend my Team meeting so I could cancel it, but we have so much work to do before September. I don't think the others appreciate how much. Today I asked another team member to work on a specific project w/out me (so I might go home) and he told me I should cancel the meeting instead. He said he can't work with that woman on his own -- that she's completely frustrating. I really want to get this software up and running before I go, but my Team members say to me that my health is more important and we'll manage w/out you. The problem is that they just aren't as motivated as me to get it done. Which I don't understand. They tell me it'll get done even if I have to go out for the surgery and yet they don't show any real interest in helping accomplish the task.

Finding a Donor

My cousin has started her medical tests to see if she can donate. Initially, her medical tests (blood and urine) showed some questionable results so we had to re-do them this week. She is in a different time zone and this causes some problems between the 2 medical centers. At first, her medical center was waiting for mine to request the records -- while at the same time, mine was waiting for hers to simply send. That caused a delay. I think I'll be crushed if she isn't a match. It has taked so long to work her up. At least it seems like a long time. Maybe it's only been 3 weeks? I honestly don't know. My days and weeks go by so slowly. I'm feeling much less stressed now, that's for sure. Not at all like the last 2 weeks. :-)

Anyhow, that's the update. If she's healthly enough, we'll move onto the crossmatch.

I'm sure people think I'm crazy

I was thinking about how the stress is getting to me. I am not doing as poorly as I was last week, but I can tell you that my general state of stress is very close the "the edge." The way I think of it is like a spectrum where one end is no stress and the other end is stress to the point of insanity. My day-to-day stress levels are such that it doesn't take as much for me to move in to the zone of insanity. Today, I am at a conference in the midwest. Actually, I'm here all week. It's been trying for me since it's a very rural area (town of 7000 -- maybe.) BREAK --

someone just came near me and rather than sit on the same couch and be social, he sat on the couch next to me. What is WRONG with humans? We're both at this conference. God damn librarians are so fucked up.

Okay, back to my original thought. They keep feeding us crap during the break. Now, there are enough overweight librarians at this conference already w/out the organizers providing unlimited frosted brownies, cookies and sodas. I went on the search for something healthier. I found some wheat thins in the vending machine (good enough, but not the healthiest.) However, the machine wouldn't take my quarters. Then I waited at the front desk for 5 minutes waiting to get a dollar bill for my quarters and the dollar bill didn't work either. Then I asked if I could get some hot tea from the restaurant, but the restaurant is closed. They offer free coffee in the lobby, but I can't have a lot of caffeine -- and they don't have any decaff. So, I thought I remembered another vending machine and went to look for it. When I found it, it wouldn't take my dollar bill. I had to get change from a passerby, but the change finally worked. I did blow up a bit to the passerby, however, saying how I was reaching the end of my tolerance for all of these inconveniences -- and that I wasn't going to "eat a goddamn brownie" even if that was the only thing I could find to eat. I'll bet she thought I was a little over the edge. Sometimes I want to wear a sign on my chest apologizing up-front for being a bit crazy -- that I'm under unusual stress. But as much as I want to provide an explanation, I don't want everyone to know. Also, I'm trying to be strong and be myself, but it's really really difficult to put it out of my mind. I just want to tell everyone -- because it's right in the front of my mind all the time -- and because when I tell people, it sometimes seems more real to me and helps me deal with it. Other times when I tell people, they don't say a thing and I think I should just keep my mouth shut since it just makes other people uncomfortable. I also think that they should hear about it. More people need to see the face of kidney transplant survivors -- which I will be soon enough. You can bet that I'll be talking about it then.

I read something about how depression has a negative impact on the survival rates for transplant recipients. I know that I am depressed, but it's not severe. I don't think anyone has said anything to me about my depression. It's either easy to hide, or people just figure it's none of their business and don't say anything. Right now I am on the verge of crying as I type this because I do feel as though this stupid world and the stupid people in it are so completely oblivious of what's going on inside of me...and isn't it obvious? I figured it was obvious. And unless you say so specifically, they won't pay attention. They don't see the signs. It's no wonder people say all the time -- I should have seen the signs or I should have pressed her more to see how she was after a loved one offs themselves. Which I have no thoughts of doing whatsoever, but if I did, I don't think anyone would even notice.

The trainer I have worked with so closely for this software I'm implementing is completely ignoring me at this conference. bitch.