Yes, I am still blogging :-)

Last post was last Thursday. Friday, Mary Lee (from work) brought over a ton of food: salisbury steak, sloppy joes, cheesy potatoes, breakfast casserole, and ice cream dessert! And it was all delicious as always. Thank you so much Mary Lee. My peeps at work really are taking care of me. Mary Lee had a really good idea; instead of me being here alone, they could put a rocking chair in my row and I could just sit there and talk to people all day, that way I could be around my peeps and I could liven the place up for them:-) Yeah, they have all said that it is pretty quiet without me there. Hmmmm, imagine that! While Mary Lee was here talking to me, she asked me why I hadn’t become a doctor with all the medical knowledge I had. My answer, I didn’t want to spend 12 yrs in school beyond high school and I didn’t want to have to study so hard. Wow! How dumb was that?!?!?! I look back at some of the decisions I made as a teenager/young adult and can’t believe I was so dumb. Like we have all said, if I could only do it over again….. Oh well, maybe in the next life.

Saturday, Linnea bowled again. I went again and helped coach a little. I stayed seated but tried to help out when I could. She got a 33 the first game and a 66 the second game. Her average going in was 37, so she is doing better. We had her ball plugged and redrilled again since her hand grew again. The first game, the edges of the holes were a little sharp, so I think that is why her first game was so low. As soon as we took it back to the proshop and had them smooth out the edges, she started doing much better. I walked all the way around the block on Saturday too. Took me a while, but I made it. I sure was tired by Saturday late afternoon. One of the gift certificates we received from my co-workers was for Ruby Tuesday, so we went out for dinner Saturday night as well. Oh man, was it good, but there was so much. My one meal was enough for 3 separate meals for me, so we took plenty home for leftovers. I even had 2 dacquiris!!! Mmmmmmm! Man, I missed my dacquiris!

I don’t remember much of what I did on Sunday, but I got an email from Sloan & Chris. They left for Hawaii for the 2008 Ford Ironman World Championship. Chris qualified for this even back in April or so. Only 1800 people worldwide can qualify. I am really proud of him, but he is in excellent shape and deserves this. His goal is to beat the 10 hour mark. Get this, he has to do all of this in less than 10 hours: 2.4-miles of swimming, 112-miles of biking, and a 26.2-mile marathon run through tough ocean waves, and challenging lava-covered terrain! I don’t think I could do all that in a whole year! So, good luck Chris, hope you beat your goal. If anyone is interested, Chris also has a blog: http://getfastorquit.blogspot.com/ And there is a live webcam at the finish line so you can see the finishers: www.ironmanlive.com. Here’s a link to the website giving some more info: http://ironman.com/events/ironman/worldchampionship/?show=about

Starting yesterday, my heart decided it was going to start doing it own thing. It started with a very irregular heart beat. Not only is it different than what it’s been since the surgery or before the surgery, but there is absolutely no regular rhythm to it at all. It only lasted an hour or so maybe, but then later in the day, my blood pressure meter told me it was doing it again. Today, the same thing, but my heart rate was down in the 40’s!!!!!! Ok, it started out in the 90’s, but had come down into the mid to high 80’s and now it goes down into the 40’s? What the heck is with that! I wasn’t dizzy or anything, I just didn’t feel right. I can’t put an explanation to it, I just didn’t feel right. I even checked it on Bryan’s machine and it said the same thing. He thought maybe my machine just was not reading it correctly. Yes, it is still irregular. So, I ended up calling Braverman’s office between 2:30 & 3:00 and told the nurse about what was going on, she talked to Braverman and called me back about 3:30. By about 3:00 my heart rate had gone back up to the 80’s but was still pretty irregular. He wanted me to go have another EKG at Carle, so Bryan took me over there and I had another one done. It was the same gal that did the last one a couple of weeks ago. It did show some irregularities and she read me what it said, but the only part of it that I knew what it meant was Premature Atrial Contractions. Well, I normally have Premature Ventricular Contractions and I knew what I was feeling was not PVC’s. So, something w/ my Atrium now instead of my Ventricles. But, she said she sees those a lot on patients who have EKG’s done. She was faxing it down to Braverman’s office as soon as I left, but that was like 4:30, so I probably won’t hear anything until tomorrow. And more than likely, they will say it is nothing out of the ordinary. I just think that it is VERY strange that my normal rate is so high then for an hour or more, it drops down into the 40’s. The only thing I can think of is maybe since my medicine is an extended release, maybe that is when it is being released into my system, but that does not explain the irregularity of it. I wish I understood more in the Cardiology world.

I am still using the Silicone Strips on my scars. The scab where the right drain tube was finally fell off yesterday, so I started putting the strips on there as well. It is really flattening out, especially the big lump at the top of my long incision! The gal who did my EKG even commented on how good it is healing up.

I called my PCP office today to find out if they had rcvd my medical records yet from Barnes. They had and they had already been sent to be imaged. I was pissed. I left specific instructions on not to scan anything until I had a chance to copy everything. Well, the nurse said she would copy everything for me but there wasn’t much there, only an operative report and a discharge summary. Ok, now tell me why did I bother to check all the boxes of what they needed to send AND include a yellow sticky note asking for the CD images of all x-rays, echo’s, etc if they aren’t going to bother to read any of it and send only what THEY feel they need to send? I also got copies of Kai’s (his PCP’s nurse copied everything before they were sent to be imaged and had copies there waiting on me!) The children’s hospital also did not include everything I asked them to include so I have to call them and have them send what I asked for that they left out. Can anyone explain to me why patients fill out these forms? It’s my GD information, give it to me!!!! And don’t leave anything out! ARGH!!!!!!!!!!!!!!!

Tomorrow night State Farm Activities Association is having a Chili dinner, so that is what we will be having for dinner tomorrow night. Linnea had her first Brownie (Girl Scouts) meeting of this school year last night and she brought home a painted pumpkin that she made look like a witch. The stem on the top was the top of the witch’s hat. I thought that was pretty clever. She did a really good job.

Kai went back to school full days this week. Tomorrow, he gets to launch the rocket he and Bryan built for his technology class, so he is really excited about that. Thursday, he has a “Cemetery Walk”. It is an outdoor theater even in which professional actors portray people who are buried at the cemetery. Then they get to go to the mall for lunch. It sounds like fun, but Kai is worried that he won’t be able to walk or stand for as long as the event lasts. I told him to make sure he carries something w/ him that he can put down on the ground to sit on in case his leg or back starts to hurt him. If he needs to, I am sure they will let him go back to the bus to sit. Then, next week he gets to go to the Challenger Learning Center for a “Voyage to Mars” and the Prairie Aviation Museum and a pizza lunch there. The Challenger Learning Center gives kids a chance to see what being an astronaut is like. On the 22nd, he gets to go over to Underwood Park where their science class will launch 2 liter bottle rockets as part of a project. So, sounds like he has an exciting few weeks coming up in school.

This Friday is Bryan and I’s 10th anniversary! I can’t believe it’s been 10 years already! In a way, it has flown by, and in other ways, it seems to have been a lifetime. I asked him last night if he were to have known that I had Loeys-Dietz and would have to go thru all these operations, see all these doctors, etc, if he would have ever married me. I know, that is not really a fair question to ask, but I just wondered what he would say. Of course his answer was, “I don’t know” If he would have said, “Of course honey” I would have known that he would have been lying:-) I don’t blame him for not knowing. If the tables were turned, would I have gone ahead and married him? Hind sight is 20/20, but foresight is 20/1. I used to think that I would want to know the future if someone could tell/show me. I am not so sure about that now, maybe the good stuff, but not the bad stuff, or maybe some cryptic warnings would be nice:-)

Every day now I thank God for my family, friends, possessions, work, and the health that I do have. I see so many people who are worse off than me and that is always in the front of my mind now. I am thankful each and every day I wake up and start a new day and every night when I have made it thru another busy day. I realize how very lucky my kids and I are to have each other, have Bryan, and to have the doctors who are experts in our condition. Unfortunately, all this realization/thankfulness has made me an even more emotional person. Seems like I cry a whole lot more than what I did when I think about how fortunate we really are. So, if you are talking to me about all of this, don’t be surprised when I start crying. I just can’t help it (in fact, I am crying about it right now just typing it).

I am down to just basically 600mg Ibuprofen 3-4 times around the clock. I wait just as long as I possibly can so I can try to get back to my normal amount of only 600mg in the morning and 600mg at bedtime. I have to say, it is much easier to get up in the mornings, not so hard to breathe, not so achey. But, I have been guilty of going back to bed after Linnea leaves for school. I don’t think I ever manage to get back to sleep, but laying there resting feels pretty good. I usually get up and around about 10:30 and get in the shower so I can hopefully be ready for my Young & Restless at 11:00. Well, I still have the rest of the week to try to stay up and do something constructive during the day.

Enough for now, so as they say in Hawaii, Hang Loose Cuz!