“All I want is to feel this way…”
On Thursday I went to the new rheumatologist to get a second opinion. I was nervous and didn’t know what to expect. As I mentioned, I read a ton of discussion boards where people with lupus said they had their diagnosis taken away. I guess since there is no one definitive test to diagnose lupus (wouldn’t it be cool if we could just pee on a stick?), that a diagnosis is subjective.
This sounds crazy, but I was kind of glad that some of my symptoms have returned right when I was ready to see a new doctor. No, I don’t want to feel like shit, but if I have to prove to someone I have this disease, then I want all the indicators there. There is no doubt in my mind that I have lupus, and I sure as hell didn’t want anyone trying to say otherwise. I can’t imagine after being treated for this mess for 4 years, someone new coming along and saying “It’s never lupus.” That may work in Dr. House’s world, but it’s not happening in mine.
Whenever I look into a new hospital, I always go through each physician under that service, look at their picture, see where they went to medical school, where they did their residency/fellowship, and what board certifications they have. Call me neurotic, it’s just something I’ve always done. I remember one of the docs looked like a creeper in his headshot. No, I can’t describe what exactly a creeper looks like, lol, he just had that creeper look in his eye.
So of course when I called to get an appointment, the first available was with Dr. Creeper. Figures. I mentioned this to my sister, and she laughed and said it’s always the creepy looking ones that are the best doctors. Fair enough. Don’t judge a book by it’s cover, right?
As usual, my sister was right. I was extremely impressed, Dr Creeper knew his stuff. We spent time going through my history, all the treatments I’ve tried and failed, my labs, my medications, ect.. He asked what I was looking for in a treatment.
I told him I just want to feel better, if that’s possible. If this is as good as it’s going to get, please just tell me so I can deal with it and start moving on with my life. If you have some options, then let’s get this party started.
He was extremely thorough in his physical exam, and I swear, he’s the Lupus Whisperer. He felt my hands for 2 seconds and asked “You feel a flare coming on, don’t you?” Why, yes. Yes I do.
When I’m cold, my legs and arms get this weird, reddish-blue spiderweb-like pattern. This is different from my Raynaud’s, and I always called it “that weird reddish-blue spiderweb-like pattern I get on my legs and arms when I’m cold.” Turns out it has a name, and is a common diagnosis in autoimmune diseases. It’s called livedo reticularis, and is caused by plugged blood vessels. Learn something new every day.
He gave me treatment options. He’s willing to treat my osteoporosis. He’s willing to put a port in me for infusions, and was surprised that Dr. Rheum wouldn’t. Most importantly, he’s NOT scared by a little congential heart defect!!!! Hallelujah!
He made an extremely valid point. If I (God-forbid) had leukemia, no one would think twice about putting a port in me. So why hold back treatment for something like this?
Bravo, Dr. Creeper. Bravo.
I must come up with a better name for him.
He sent me on my way with a positive outlook, which is what I REALLY needed. I was seriously getting myself into a funk. He increased my prednisone with hopes of fighting off this flare, and gave me a script for a million and a half labs. I’m curious to see what they will look like.
I spoke to my cardiologist and he gave the green light for the port, so I’m going to spend the weekend doing some reading and deciding if it’s the route I want to go. I’m 90% there.
I wonder if Coach makes an implantable port…