Along for the Ride

Over the last week, I've been thinking a lot about choices. Every day, we are bombarded with a million mundane choices, from which parking spot to take to which salad dressing to use. Even simple things, like standing in the bread aisle at the grocery store, can sometimes make my heart palpitate. I occasionally become so overwhelmed with choices that even simple little decisions start feeling like major decisions that require a pro/con list - "this bread has 1 more gram of fiber per serving, but it's not on sale, hmm..." I feel like we often get stuck in this endless loop where we're constantly having to make a million tiny little decisions. Then, we get to a point where some big, tough decisions have to be made, and it's like we ran out of decision cards. Sometimes - when the stakes are high and the end result really DOES matter - I'm feel like I'm left standing there with an empty palm, not knowing what to do or where to turn. In the end, I fe...

The last few months have been a trying time for our family. We've had a myriad of events, mostly medical, that have caused alarm and concern with various members of our family. In January, my father began a series of tests to qualify for a double-lung transplant. He was diagnosed with scleroderma in 2007, and over the last few years, he has developed pulmonary arterial hypertension. As a result, he needs new lungs. We were initially surprised that the doctors wanted to go ahead and start testing and get him on the list, but I'm glad they started when they did. What we thought would be 1 week of testing became 2 1/2 months of ongoing tests. These tests culminated in a committee discussion of my dad's case today. After reviewing everything, the committee deferred the decision, asking my parents to meet with the lead transplant doctor before proceeding. The testing had revealed some additional risks associated with the transplant that my parents needed to weigh. The first conc...

I've been struggling with writing this entry for a while. I knew I wanted to write about it, but I wasn't quite sure how or when I'd be ready. I'm actually thinking that it might be sort of anti-climatic now. Kind of like that day my brother delivered the Girl Scout cookies to work. I literally thought about the box of Thin Mints under my desk all day long. By 7th period, I could practically taste them. I had waited for so long that I was anxious to taste just 1... but a serving size was 4, so I had to get all 4 (of course). The first bite, my heart was ready to sing! I was yearning for that annual treat of minty chocolate goodness coated in the thin coating of sublime bliss. But it tasted a little.... well.... bland. And dry... I thought, OK, this is just because I built it up in my head too much. The second cookie will bring me that moment of sheer joy. But it was cakey and got stuck in my teeth. Disappointing. I half-heartedly finished the other two cookies, closed t...

Yesterday I had the opportunity to meet with a new rheumatologist. Before I summarize the visit, I have to give props to the amazing dermatologist I met with who arranged our appointment. My father, having scleroderma, has been seeing a great dermatologist for a while. My mom saw her as well, and knowing that being on immuno-suppresive medications could cause latent issues (like skin cancers) to arise, I made an appointment for an annual skin check. During the visit, this dermatologist had a very candid conversation with me about finding good doctors. When I mentioned that I was on the lookout for a new rheumatologist who had more experience with Wegener's, she said she had just the guy. She met him for lunch the next day and called me two days later with an appointment time. I was delighted! Last week, my Thursday appointment with him was rescheduled to Wednesday. I happily adjusted my schedule and drove to downtown Dallas to meet with him. He spent over 3 hours talkin...

In recent weeks, I've been thinking about ways that I could help myself "get happy". I think dealing with any kind of chronic illness or ongoing stress can cause us all to get a little bleary-eyed and tired from time to time, so over the last few weeks, I've been sort of cataloging a list in my mind of little tricks that make me happy. Anytime I feel that things are slipping out of my control - whether it's from the uncertainty of a medical prognosis, the unknowns of future job and financial situations, or general "blahs" from life - these are little tricks that seem to help me keep my chin up. While I would love to say that I'm able to maintain a Zen-like level of calm at all times, meditating on things as they occur, sometimes I just need some distractions to keep that spring in my step. I'm always looking for more great ideas, so please feel free to comment with your own "get happy" tricks! 1. Take a walk outside. Even 10-15 m...

Today I had a chance to meet with my nephrologist for a follow-up appointment. It had only been 1 1/2 weeks since my last visit, which is a little shorter than my 2 week normal, so I wasn’t sure what to expect. At my last visit, my doctor and I had been discouraged by my lab results, which showed a significant jump in creatinine numbers (aka kidney impairment). All day long, I was a little agitated and nervous, and I was afraid that I’d be getting another blow this afternoon. My “threshold” to dialysis is getting a little too close for comfort, so I was relieved this afternoon when I saw my results. Finally, some good news!!! My doctor was very encouraged because my creatinine levels seem to have stabilized a bit. At this point, I’ve been “on meds” since Jan. 18, so we’re about 6 weeks into treatment. He was so happy with my numbers that he’s even thinking of reducing my prednisone dosage a bit - if my numbers continue to hold where they are - in the next 2-4 weeks. The stero...

As I’ve been looking back over the last few years, searching for clues about where this mysterious disease seems to have come from, all of the pieces seem to fit together in an eerie way. I graduated from my undergrad and started teaching in 2001. Over the course of the next 3-4 years, I lived alone, started my master’s degree, and began the “search” for my soul mate. After MANY creepy coffee dates from match.com, I met Mike. We fell in love long-distance, talking for hours on the phone or IM every night. He lived in Austin, and I lived in Plano, so I became one of those weekend road warriors, loading up Fred the Ford with Mardi the Mutt and my overnight bag every weekend to barrel down I-35 to go visit Mike. Just months into our relationship, we knew things were developing seriously, and we were already planning the next stages of our relationship. By 2005, we were engaged, and in 2006, we got married in McKinney. Around that time, my father had started showing some mysteriou...