So, I saw the specialist again today after 6 weeks of waiting. The first few weeks were utterly exhausting–waiting to find out if I had cancer, multiple blood tests, microbiology tests and being told by my family doctor he had no idea what was going on and basically leaving me without any answers at all. After the first few weeks though, once I found out I didn’t have cancer, I think I put the rest of it out of my mind.
The specialist is nice. Way too busy, but really, really nice. So after 3 hours of waiting, he walks in, asks me how I am and tells me he’s almost certain I have form of lupus. He injects the rash about 15 times with what I think is a steroid (I really need to start asking questions), prescribes me a strong corticosteroid cream and refers me to an internist who deals with autoimmune diseases. He’s fast, but to the point and I actually get the feeling that he seems to care about helping people. To top it off, he totally made my day when he said he’s going to cc my family doctor on the referral. I thought to myself ‘ha, stick that up your ass doc, brushing me off because you are too busy to help me and think you’re the smartest person in the world‘.
I’m going to assume it’ll be at least 6 months (if not more) before I get to see the specialist and see what she thinks. In these next few months I’m sure I’ll still be willing everything to disappear all on its own and will hold out hope I’ll walk into her office, she’ll take one look at me and say ‘oh, that’s nothing to worry about, there’s nothing wrong and you’ll be totally fine.’
It’s the waiting that I’m starting to have a really hard time dealing with. In the last year and a half I feel like I have had no choice but to become really, really good at waiting and I’m tired of it. This time it’s more waiting to see whether or not I have some autoimmune disease that’s never going to go away. In a lot of ways, I feel really okay with the possibility of having it (it’s better than cancer). In some ways though, I’m not so sure how to feel about it. When something happens and the outcome is not in your control, waiting for answers and waiting to feel better can feel like life or death. It’s hard not to let it preoccupy your mind and I cycle through periods where I feel like nothing can soothe or fill that terribly anxious space within me.
Although it feels like we’re finally heading in the right direction, I can’t help but feel a little let down and pissed about the whole situation. It just shouldn’t take years to figure out what’s going on with people. In my opinion, my doctor should have been a little more concerned. Just because I don’t whine and cry about this hurts and that hurts and I’m not feeling well doesn’t mean that there’s nothing wrong. Apparently I’m the worst type of patient to have, because I don’t say anything until it’s gotten to the point where it’s a bit out of control. Well if that’s the case, then you’d think he’d at least take me a little bit seriously when I do whine a little bit.
But I guess that’s what I know now. Instead of dealing with it and trying to learn about it, I’m researching new tattoos if/when I get a confirmation. Because what better way to deal with the diagnosis of a lifelong disease than putting it on your skin to mark the occasion? It could be a butterfly (because of the malar rash often associated with lupus) or it could be a wolf (the constellation Lupus is Latin for wolf). I think I like the wolf idea best because my youngest son’s name is Connor (which also means ‘lover of hounds or lover of wolves’). Perfect right?!?!