I never thought much of all of the “global warming” hype. But it’s almost April and it’s snowing on the valley floor in Oregon. Come on. Rain-yes. Snow-Not my cup of tea in this quantity (a lot is fun to play in–just a bit is just cold). Any diehard global warming supporters should just come sit on my porch right now in their shorts and prepare for the end to come, but I’m afraid it’s going to be a cold one rather than a warm one here!
I had Ulcerative Colitis for about a decade. In that time I tried endless things to handle it, including various diets. None of these worked for me, but I did learn over the years which foods I had to avoid because they inevitably caused problems: broccoli, seeds, certain tomato products when I wasn’t feeling perfectly, etc. I was also very good about eating sugar (I hardly ever had any). I gave up sodas and junk food entirely. Occasionally I would use a little candy if I hadn’t eaten and my blood sugar was getting too low (for the last while I was too thin to have any kind of fat reserve).
But since I’ve had the surgery I can eat WHATEVER! It’s great. People are used to me having limitations so I’ve been asked a couple of times what I could eat. And now I reply, “WHATEVER”. It’s really cool to be able to eat broccoli and have some sugar (my wife is really happy about having someone to “eat desert with” as I NEVER would do it before). I still eat very well thanks to my wife’s care in cooking for our family, but it’s wonderful not to have to have such attention on food and just be able to enjoy it.
The other change is that I can enjoy it. For the last long while, food was very uninteresting and I wasn’t able to gain weight. But now I can eat like a pig (I’m constantly surprising my wife with the quantity I can put away) and the scale is continuing to go up.
A couple weeks ago, I went to OHSU for a kidney stone (a drawback from long term prednisone use to try to control my colitis) and while I was there, the nurse gave my daughter a Beanie Baby to play with. We were very impressed and my wife wasn’t totally sure that she got to keep it–she did.
And then I was back a week or so later to get the kidney stone removed, the first visit was just for pain and we found out that it was in fact my massive kidney stone (about 7mm, which for those of you that don’t know is a good sized stone). Anyway, I was in the elevator with a family and the little boy had a Beanie Baby with a tag, so it was brand new. I thought of the one they gave my daughter and realized that they must just have a huge stash of them that they give out to kids while they have to wait for someone else to have some procedure done. I think that is great. It’s very considerate. Our local hospital doesn’t do that. When I went there for a previous kidney stone, we just had to sit around and entertain my daughter without anything really there to do it with.
The other day my wife and I were discussing a situation where we could save money each month by switching cell phone providers. And one thing that came up was that we might be able to cancel our internet and just use our phones (turns out this won’t work–oh well). And she brought up canceling our TV (since it’s in a package with the internet). My kneejerk reaction was that we couldn’t do that. We had to have TV. At least the basic package. But then I looked at it. I’ve been reading a lot since I had my surgery and have hardly watched any TV. In fact, TV is rather boring now. I’ve used it a couple of times to fall asleep–turn on some movie or TV show that I’ve seen before and out I go. Anyway, I realized that I don’t really care if we have TV or not. I still like to watch movies every once in a while, but we have lots of movies and can get NetFlix if we need to get some more (with a one-year-old watching movies is a luxury my wife and I don’t really enjoy anymore 🙂 And my wife has her couple of shows that she likes to watch, but she just watches them on the internet while she nurses. And for other TV shows we have been watching them on DVD, which is much better because you can start at the beginning and work your way through at your own pace.
I have a funny dog, and I really like him. He’s a pug. We rescued (got him from a rescue organization) him a couple of years ago and he’s come a long way from being in total terror to being quite a dufus. He gets overly excited when people come to the house or we come home. He’s still very good with my daughter and patiently sits there while she pulls on him and gives him “hugs” and grabs his paws.
But one of the funniest things about him is his love of bath water. In our old condo, he would leap into the bathtub after we had taken a shower and lick up any spare water. And now that we have a separate shower and tub and the tub is too tall for him to get in, he still tries to break into the shower to slurp up any leftover water. You’d think we don’t ever let him drink. But we do. Maybe we could have a better set up (he has to go outside to get his water because having a water bowl inside with a one-year-old just doesn’t work unless you really like to mop), but he will go get this water right after he has been outside with his water bowl. It’s just something he likes to do.
Despite the many downsides to having surgery and being a parent, like not being able to pick my daughter up for six weeks because she weighs more than I am allowed to lift, there is one plus: early bedtimes and naps. When I first got back from the hospital, I needed to rest extra in between working and other activities, so I took naps like my daughter. Our schedules didn’t always match, but sometimes they did. And I went to bed when she went to bed. That’s nice to be able to go to sleep at about 8pm without it upsetting anyone, because they are all asleep also (my wife goes to sleep with my daughter and then wakes up early to work).
I don’t know if this is a common thing or not, but when I had things happen physically (with my Ulcerative Colitis), I found it very workable to only tell people the details that were actually interested and who actually cared about the answer. I found that most people ask how you are or if you are doing better mostly as a social “hi, how do you do?” type of thing as opposed to an honest, sincere request for information. These people were totally fine with an answer like “yes, I’m doing better” or “things have definitely calmed down”.
One of the ways I found out who actually cared (besides those who I already knew cared) was that they usually wouldn’t accept those types of answers. They would say something like “that’s great, but HOW ARE YOU?” blowing aside the social answer and actually requesting information. And I usually gave it to them at that point–and depending on what the information was I might ask them not to spread it, not because I was embarrassed, but more because some things just are socially acceptable or are hard to confront (like most of the things people with colitis or Chrons deal with), so I would try to keep them out of the “limelight”.
Anyway, I guess I’m not really applying that if I’m going to post about things, but that’s how I’ve dealt with giving people information up until now. I’ll probably still approach things this way in person, but if they find out via some other method, I won’t be upset. I can handle any weirdness that might show up from those people that shouldn’t have gotten all of the nitty gritty details. Honestly, if they really can’t handle it, they probably shouldn’t be dealing with me, but I would say my friends and family and associates are all fairly high on the scale and would be able to handle it should they come into possession of the data.
A friend of mine suggested that I blog about my experiences with Ulcerative Colitis and the surgery I just had to handle it. I’ve been meaning to, but haven’t gotten around to it, but that little push has inspired me, so we’ll start small and I’ll try to cover everything in and amongst my other random thoughts about life.
The first thing I can think of to write about is the difference working with professionals at the top of their game. I have worked with many doctors over the years and I finally got referred to OHSU. What a difference. Not to knock the other guys, but the doctors at OHSU know their stuff, and they are a pleasure to deal with. Everyone is very friendly. I really can’t say enough how much this meant to me as I was deciding to have the surgery and going through it.
My surgeon was amazing. OHSU is a teaching hospital so when you stay there, it’s kind of like Grey’s Anatomy–all sorts of people come visit you. And it’s usually the same people over and over again so you sort of get to know them. And I had several say that my surgeon (Dr. Herzig in case anyone wants to go see him) was the best person they had worked with so far for various reasons. And he did a great job on my surgery. It was done laparoscopically (little camera and tools) so I didn’t have a big wound to heal, just four little ones and the one for the ileostomy. After about day two they didn’t hurt. I was definitely sore when I tried to move, but otherwise no real pain medicine. I took more pain medicine from the muscle cramps I got from sitting in the hospital bed for several days than I did for the whole surgery.
It takes a while to get into OHSU since you have to be referred and they are booked for a long time for new patients, but it’s worth it. It’s like getting into an exclusive club with all the good stuff. I’m sure other institutions where they are at the top of their fields and doing research and teaching are similar, so I definitely recommend finding one rather than sticking with your local doctor if things aren’t going perfectly.
Being a dad is one of the coolest things I am right now. I had been really sick for most of Daphne’s life and was her “dad” in name only. I wasn’t really able to do much with her. I was always tired or working to support our family and so that my wife could be a stay-at-home mom and fulfill everything that I wasn’t able to do also.
But all of that has changed since I had my surgery. I am feeling soooo much better and now I am able to BE a dad. I still can’t pick Daphne up because she weighs more than my temporarily weight restriction (to let my abdominal muscles heal), but I can chase her around the house and talk with her and play with her. I can also go places with my wife and her, which I wasn’t really able to do before. You have no idea what a cool thing it is to be able to go watch your daughter learning to swim after a year of having to stay home and hear about it only.
I love it. I wouldn’t trade it for anything. If nothing else came from the surgery, it would have been worth it (of course I am able to do many other things as well so it’s even more worth it).
Ok, I am going to try to start blogging more consistently here, but you’ll have to stick with me a bit as I have quite a few things that I would like to talk about that I have backlogged so things might come out randomly as they come back to mind.