Thanksgiving 2012

I've said it before, and I will say it again.....Thanksgiving is my favorite holiday. It is all the good stuff of Christmas - food, family, time off work - without the stress of giving gifts. Plus, Thanksgiving usually has good football to boot, while Christmas has movies or basketball....I guess I would prefer some good college football. Okay, so what have I learned since Thanksgiving 2011. A couple of things have made an impression of late related to gratitude. First, this past Sunday at church we were challenged to identify 100 things we are thankful for. So on the drive to my parents for Thanksgiving dinner, Amy and I led a conversation with the children about 100 things we are thankful for as a family. It was an interesting list. I would have to say about 60% - 70% were about people, health, and experiences. Of course, the remainder were things - houses, jobs, toys, cars, etc. What struck me though was that our children listed family, neighbors, and teachers first. That made my heart smile because we live in a society that is about things. And I know my children love their things because I hear about their Christmas present wants all the time. But when we sat down and talked as a family, it was the people and relationships that bubbled up first. I think there is a lesson in that for all of us. The second lesson I had was similar to the first, but slightly different. I was able to attend church on Thanksgiving morning by myself. (G was sick, Amy was with her, and E protested because he wanted to watch the Macy's parade....he won.) There was the traditional Thanksgiving music, a time of where the audience was able to share things they were thankful for (try that with 1500 people sometime - exhausting), and a message. Within the message was a thought, 'What would you do if you woke up in the morning withOUT things that you forgot to express thanks for the night before?' Well that obviously makes one think about their attitude, and gratitude for the amazing blessings we have. The people in our lives, health, spouse and children, neighors, friends (heck all relationships), jobs (even when they are stressful or frustrating), toys, games, cars, house, healthcare options, newspapers (I love newspapers!), religious freedoms, country we live in, etc. The list is longer than 100. I continue to live in a space that has its frustrations related to many things. But at the end of the day, I have a lot more things to be thankful for than one can imagine. And I choose to remember and focus on that versus the frustrations.

One Year Later

It has been some time since I posted a public update. But that doesn't mean I haven't been thinking about how my disease affects my life. A couple of recent thoughts... It has been one year since I had my surgery at UPMC. I went into the operating room expecting that I would have zero intestine left, and that I would be TPN dependent until I received a transplant. When I emerged I was told I had 100 cm left and one last chance to live with my gut before needing a transplant. A blessing, but change of plans. I went from living with the unexpected and unknown to battling one more time with my fragile body. Since my spring time flare up, I have been doing really well. Between Remicaide and prednisone, my health has steadily improved. I've gained weight and strength, am eating to a point where I no longer need TPN and only saline at night. I haven't had a line infection. I've been able to play with the kids this summer. We bought good bikes, kayaked in northern Michigan, went to Florida for work and play, enjoyed Lake Michigan, and had a lot of fun. Tomorrow the kids go back to school, and Amy starts teaching again. I continue to work and will need to make sure that I don't over do it. We are throwing the kitchen sink at the Crohns with the prednisone and Remicaide. If we go backwards, I'm running out of options and I would prefer not to head back to UPMC for other than a check up. So the State of me one year later is I sure am thankful. Wonderful wife, wonderful children, wonderful boss and employer, meaningful work, it's a good life. It makes one realize that we need to take advantage of every day we have been given.

Past Few Weeks....

The past few weeks have been busy! The end of school always causes a rush of activity in the life of a teacher's family. Report cards need to be written. Teachers get reassigned to new buildings. While others retire. There are graduation parties for former students. And when your children are younger, there are plenty of spring/summer activities. Swimming starts. Soccer finishes. Tball gets going. Summer camps. VBS. Late nights because of the longer sunlight. All good things, but busy. Same for my work. When you have been in and out like I have, there comes a point when things climax into NOW. Not next week, not in a month, but NOW. And that's okay. Well, it has been NOW at work. Home life has been busy with the end of school. And I am so glad I am feeling good! I've been able to keep up at home and work. I've been able to watch the NBA games and still have energy in the afternoon. I've gained weight. I have nothing to complain about, and only praises to give. My next trip to the doctors is on Monday, July 2 so until then I will keep keepin on, and smile. The sun is out. I can eat this summer. School is done for a few months. Summer is upon us.

Hiccup Update

Well after my little hiccup with the blood clots on Friday, it took a while to figure out what was going to occur. After advocating for myself, I was able to leave the hospital on Friday with just a periferal (sp?) IV line to run the antibiotics over the weekend. Then, I returned to UChicago yesteray for a new Central Line (Hickman), and came back home. Today I went to work and it was like - 'Ahh, that feels better.' Next week I head back to UChicago to see the team as a follow up from the last month. More to come next week :)

Hiccup

So I have a hiccup! Blood clots in both my upper arms. So now we don't know if I can get a new mid-line PICC in or not today. Which of course complicates whether I can go home today. Here is to positive thinking, and getting the service to put a line in. More to come....

Funny Week

It sure has been a 'funny' week. After getting discharged from the hospital on Monday, May 7 I stayed home to get stronger, and then started to do some work from home, and was ready to come back to work today (5/17). Unfortunately, on Tuesday, I received a call from the UChicago team informing me my blood work was problematic. High white cells and billyrubin. So we redid the blood work on Tuesday and I was scheduled for treatment and clinic on Wednesday at UChicago. On my way to UChicago I got good news saying my blood work was better. Great! We will see you soon. An hour later....got a problem, the blood culture came back positive and we need to admit you to the hospital for antibiotics and to pull the line! Come on.....really? Well that turned into we can't find you a room, so go to ER to start treatment. ER was backed up all day because of the room shortage so they couldn't see me until 8 pm. We started antibiotics then, but I didn't get into a room until 4:30 a.m. today. (Who is getting discharged at midnight so a room opens up? Strange.) Anyway, I feel fine. No pain. Just a blood infection. Should be headed home and then back to work on Monday. I'm ready for some normal. It's been a long April and early May.

Day by Day

What a difference each day makes. I can't believe how much better I feel this week in comparison to last week. The swelling is gone in my hands and feet. I'm hungry all the time and don't seem to have any blockage issues after I eat. My energy has increased significantly. And my allergies don't seem to be causing as many problems in my head. In short, I feel alive. Don't get me wrong, there are still issues. My joints still hurt a bit. My stool is not what anyone would consider normal. I have to take a lot of medicine. And I sleep more than most. But in comparison to last week - Wow! The past month I have had a few 'aha moments.' Maybe I've inferenced them in my posts before, but I guess they are becoming stronger beliefs - so if there is duplication here, forgive me. The first aha may seem ridiculous to some, but Amy and I call it the 'Good Will Hunting Learning.' Remember when Robin Williams character tells Will Hunting that the abuse he received early in his life was 'not his fault.' Hunting says....'I know, I know.' Williams character comes back and says....'It's not your fault.' Again, Hunting says 'I know, I know.' And Williams character comes back again and says.....'It's not your fault.' Ultimately, Hunting and Williams character hug each other tight and share a good cry. Well, for years and years I've been asking the question 'Why do I have Crohn's disease? What have I done to deserve this? What is God trying to teach me through this?' Ultimately there are no easy answers to these questions. And it can drive your mind crazy, and you reach for answers. Well in the hospital last week when my body was attacking itself, I was sharing with one of my physicians all the hard work I've been doing to take care of myself. Working less, eating carefully, resting more, etc. I said I don't know what else I can do or what I did wrong. He looked at me with his kind eyes and said, 'I hope you know that this is not your fault. You didn't do anything wrong. Your body is doing this, but you didn't do anything to cause it.' Aha - Good Will Hunting. I can give myself a break because he's right. Sometimes you just need to hear it from an expert to believe it. The second aha revolves around process. I had two discoveries related to this in the past two week. Even though I didn't feel well on my birthday (4/29) we went to church. And the message was about joy, and finding it. One of the points was that so often in life we think we will find joy when we reach a certain outcome or goal. But so often things don't go as we totally plan, and we never quite reach the goal. However, if we live in the moment and not always living in the future, the likiness that we find joy is higher. The other part of this was an article I read about reaching goals in competitive swimming. So often the conventional wisdom is you set a goal of 'x' time, and go for it. However, the article correctly pointed out that unless you break that down and look at the processes you utilize, and improve them, you will never reach the goal. So you make sure that your dive has this, you breath every three strokes, you have so many kicks in 25 meters, etc. And if you concentrate on the small steps, and doing those right, the ultimate goal can be achieved. For me, these two aha moments have really made me focus on daily living, being attuned to the moment and not getting ahead of myself. It makes me focus on the processes of life, and hopefully that will bring joy in the short, mid and long term.