It’s been a little quiet here on the blog lately. That is partly because work/life has been c.r.a.z.y. and partly because we did a little traveling last week.
One of the places we visited last week was Charleston, SC on a vacation/health-related trip. I had an appointment with a Scleroderma specialist at the Medical University of South Carolina and I’m thrilled to report that the results of that visit were better than I expected.
I haven’t mentioned this yet on the blog because I wasn’t sure what to say or how to explain it. For years, I’ve had an issue with my hands & feet where they turn red and I get a burning sensation in them. Sometime during the past year, this began change to the extent that it started happening more frequently and with greater intensity. In addition, they also started turning white/cold/numb before the redness and burning would occur.
I mentioned this to my oncologist who immediately said “Raynaud’s” and suggested I see a rheumatologist. The labs came back positive for an autoimmune disease called Scleroderma and he felt like I had the limited variety of it. He also suggested that I might want to go to MUSC to see a Scleroderma specialist there to get confirmation and discuss it with him.
The first thing they had me do was an echocardiogram to make sure my heart is functioning as it should (and it is). Then I did a breathing test so they could make sure my lungs were functioning as they should (and they were). In fact, the doctor said she hadn’t seen numbers that good in a long time. :)
Then we met with one of the resident doctors as well as Dr. Silver, the head of the Rheumatology/Scleroderma Center at the hospital. Dr. Silver felt that I have the mildest of mild forms of limited scleroderma, and even stated that if my labs had not tested positive for it he’s not sure he would even diagnosis me with it. This made me very happy since the more serious forms can be pretty awful. He ordered some more labs so they could have their own numbers as a baseline, suggested we treat the Raynaud’s, and monitor the Scleroderma with yearly visits.
I felt great about this, very pleased to have a mild-mild form of it as well as a plan for dealing with the sometimes painful and always annoying Raynaud’s symptoms. But then . . . the news got better. The resident doctor called Friday to say the labs they did came back NEGATIVE for Scleroderma and with that in mind, they did not feel that I should be diagnosed with it at this time! Woohoo!! They have officially diagnosed me with a General Connective Tissue Disease, which would be Raynaud’s.
If you noticed the title, you may be wondering what this has to do with elevators. Well, for the first (and hopefully last) time in my 44 years of living, I got stuck in an elevator! Barry and I were going from the building where the echo test was done to the building where the breathing test would be done and got stuck with a plastic surgeon, a nurse, and three other people in an elevator for 30 minutes. The longer we were in there, the warmer it got. The warmer it got, the more anxious I got. But thankfully, no one freaked out and they managed to get us out, and we made it to the next appointment only five minutes late.
The funniest part was when they said the elevator would have to go back up to the second floor before it could come down the first and that they wanted us to ride back down to the first floor so they could get our names for their records. Ha! Fat chance. We all got off that elevator on the second floor, took the stairs, and never looked back. :)
And that’s where things stand with me right now. What about you? How are things in your corner of the world?