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.

Ahh...

Yesterday was the first day that I felt like I had a new lease on life. The acute pain from Monday was gone. The chronic pain I am used to feeling had slowed. And I could actually take a deep breath....ahhh. I was able to check email and start to catch up on all I missed. I read one of Anthony Bourdain's books on food and travel. The children arrived and we had a lot of smiles, stories and good laughs. I received a card from one of the girls I've coached over the past few years - saying she hopes I get better and that she misses me. It was a good day. This weekend the kids are going to have plenty of stories. They are off to downtown with Grandma to the Lego and American Girl store. My Aunt, Uncle and cousin are visiting from Iowa so I will get some new stories from them. Through the past few weeks, my conviction that life is good has not changed. It sure can be frustrating some times. But through these frustrating experiences we can see the beauty of the moments when lives comes together and the smiles flow.

Making Progress...

It feels like we have made progress today. : ) Overall, Matthew is feeling MUCH better, he is able to eat and he has more energy. We met with the nutrition team and it was decided to start up with tpn again (nutrition through his picc line). Tpn will help improve his overall nutritional health and help him gain weight (he has lost 20 pounds since the beginning of April...he really doesn't have 20 pounds to lose, so tpn along with eating should help him gain back the weight). The doctors are pretty sure all the swelling in Matthew's hands/feet are a result of his crohns disease. Bloodwork results are negative for infection and his body is responding well to the prednisone. The scopes showed inflamation in his intestine so they will do another scan of his belly tomorrow (we are praying everything will come back clear). The steriods along with starting a crohns medication should help him to continue to heal and improve. There are a few different biological drugs that are used for treatment of crohns disease. Because the cimzia he had been on doesn't seem to be working, the doctors are starting him on remicade (an infusion drug that they are giving him tonight). Remicade tends to show results fairly quickly (Matthew had been on remicade before and had positive results), we are hopeful he will have good results again. Thank you for your prayers!

A quick update

The good news of the day is Matthew feels better than he did yesterday (thanks to the steroids and pain meds.) The not so great news is that the scope showed a small area of active crohns in the intestine. The doctors still are not sure what is causing the swelling in his hands & wrists and will do another round of steroids tonight. We are hopeful that we will soon have some answers, although the theme seems to be about waiting....so we will try to wait patiently. Our friend Deb (who certainly knows her share of loved ones health struggles, but who handles it with such grace), emailed us today. I am closing with a quote from her, "...the road continues to turn and bend. The good news is, you still have a road!". Wise words to remember - thank you Deb. Thank you all for your prayers, love & support!