How the diagnosis of an autoimmune immune deficiency disease filled me with more Grace
than I ever imagined and how I am now living in that Grace each day.

Tuesday, March 12, 2013

Long Lost Blogger...

Dear faithful readers, 

Sorry it's been so long since I last posted. I think I was suffering from severe grief, depression and illnesses that kept washing over me like waves. It has taken me several months to get over saying goodbye to Dad. I was kind of out of it this weekend and I realized that it had been a year since the weekend that we moved him down here. I thought things would be different now. I have times when I miss him dreadfully, like on my way to infusions early in the morning when we used to talk on the phone. And there are times in the grocery store when I see something that he enjoyed and I get this feeling in my stomach. 

We were able to get away for a few days at Thanksgiving and see Carl's sister and family at his Mom's house. The kids had fun playing with their little cousins, and we all had a good time staying up late and catching up after 5 years! Of course, when we got home, the dogs were so excited to see us! Lily was running around and all of a sudden she was hop-scotching on 3 legs. After a trip to the vet the next day, we found out that the poor thing had torn her ACL. Yep. Add another surgery to the Irish family this year! Doesn't she look cute in her little sunflower cone of shame when she was reunited with her brother Charlie? 
In December after having strep 8 times last year Topher had his tonsils out. On the day before Katie's birthday. He had a very tough recovery but he is feeling much better since. However this weekend he came down with asthma related bronchitis and has missed days 20 and 21 of school. Oy!

Last year we didn't really go all out with decorating because we traveled to PA and then I was so sick. So this year we really tried to get into the Christmas Spirit. 

January found me with a resistant sinus infection so we added a second antibiotic. Unfortunately, my body did NOT like it, and I broke my New Year's Resolution of avoiding the hospital on January 10th with my first ER trip of the year. I was having tendon issues caused by a rare reaction to the antibiotic Avelox. We treated that with steroids and pain medication, and 9 days later I had more pain, this time in my chest. My doctor thought it was a possible infection in my port, so she sent me to be evaluated. BUSIEST night in the ER in over a year. Awesome. After about 16 hours, I was finally admitted with pericarditis, or fluid around my heart. They also diagnosed secondary costochondritis, inflammation in the connective tissue in my rib cage. I can't even tell you how much pain I was in. Thankfully, I was able to go home in 48 hours after they made sure that I didn't have any abnormal heart rhythms. 

The Friday before the Super Bowl I woke up and was unable to put any weight on my foot. After about 2 hours the pain subsided but didn't go away. Saturday it was worse, but again let up after a few hours. By Sunday, the pain was constant, and I could not even walk to the bathroom by myself. Guess where we ended up. If you say the ER, you get extra points. Even though I hadn't taken the Avelox in a month, it was still attacking my tendons and had gotten to my achilles tendon on my right foot. I was given some hefty steroids, pain medication, a cute little shoe, and instructions to follow up with my doctor. We did get good service and since there was that blackout we actually only missed one play of the entire game since it happened while we were driving home!

The next day I got in with the orthopedic doctor, who said that little shoe doo-hickey wasn't going to cut it, so I got "booted" and ended up with a rolling knee walker. Which I don't have a picture of, but since the tendons in my hand and  elbow were affected I couldn't use regular crutches. And thankfully after about 2 weeks the pain let up and I was able to walk on it more. 
Quick aside: They brought me a "knee boot" which came about to my hip. I looked at the nurse and informed her that I didn't have enough real estate for the size of that boot. She blank stared at me. I asked if I was supposed to be able to bend my knee, and she said, "Yes, of course." I asked her to put the hip-wader of a boot next to my leg. So I finally ended up with what they call an "ankle boot" which came to about 1.5" below my knee. I haz short legs, y'all!

So there is a short update of the past few months. I have been dealing with severe fatigue, the kind where getting out of bed is exhausting. Carl is holding down the fort, which is what he does now. He is still running, and I was so proud of him when he completed the Susan G. Komen Race for the Cure and then the Turkey Trot on Thanksgiving Day. 

Stay tuned...more to come.....


  1. Welcome back! You've been through so much this year. I hope and pray it gets better from here!!

  2. It's been an awful cold year for us, too. I can't wait until the sun comes out more often--here's hoping for a break for us all!