My latest Scleroderma Center visit

Our latest visit to the Scleroderma Center at Johns Hopkins in Baltimore was today (Dec 5th, 2007). We set out before the sun was up and arrived in Baltimore early. They checked me in, took all my vitals and in in a couple of minutes Dr Wigley came in. For those that saw my last post, you know that Dr Wigley was on the Today Show a month ago with Bob Saget discussing scleroderma. When he came in, I told him that I had told all my family and friends that I had a hot looking 25 yr old doctor, and now the jig was up. He filled us in on his morning getting ready and being on the Today Show.

In October, a month after my previous visit and the primary medication was reduced, I started to have issues with my hips. The same problem I had with my legs and forearms was happening with my hips. It was so uncomfortable I couldn't sleep through the night. Dr Wigley had me go back to the full dosage on the primary medication. After a few weeks, the pain subsided and hasn't bothered me much since. At today's checkup he indicated it might not have been specific to the reduction in medication. He's done this longer then I have, so who am I to argue? We reviewed my last lung test and it came back normal and slightly better then the previous one. All my blood tests came back fine. He checked everything out and said I am doing great and it's the best he's seen me yet and that we will look to reduce the medication a bit again and see how it goes.

When he was done, there was some vials of blood taken for more research and another walking test for research. They also have a new research test which I signed up for. Dr Wigley was reading an article about someone at Johns Hopkins working on miniaturization related to the Hubble Space Telescope and they together have developed some prototypes of a small computer monitoring device which will measure outdoor temp as well as the skin temperature of 1 of my fingers. Most folks with the type of scleroderma I have also have a condition called Raynauds which causes your fingers (and toes) to turn purple or white from the cold. This monitoring will capture information they haven't previously had available. So what the heck, I'll wear it for 3 days, send them the device back and it will have all the data for the 3 days for them to download and analyze. They definitely do some neat work at research centers you couldn't get by going to a local doctor.

When we left, it was a mini snow storm that lasted most of the ride home. The most important thing during the day were the girls got their hair cut and they are each happy with how it came out. Driving 6.5 hours for a checkup is nothing compared to dealing with 2 teenagers with unhappy haircuts. A good end to a good day.

It's been 11 months since I've been seeing Dr Wigley and on the medication and things have definitely improved. Last year at this time it was getting pretty rough. I couldn't hardly get ski boots on my feet let alone a few runs down the slope. I'm hopeful this years ski trip to Mount Snow between Xmas and New Years will prove a bit more enjoyable. Skiing with my wife, the girls and friends we always go away with is way too much fun to miss out on 2 years in a row. I wish each of you happy holidays and a happy and healthy new year. If nothing exciting happens, I'll check back in the beginning of March after my next visit.