I'm realizing that my "clever" blog names are not half as clever when I'm tired, and pressed for time.
I saw my new Rheumatologist today, and I have to say that on one hand I was very excited to learn new things to help me get one step closer to a normal life, and on the other hand I was very nervous. My primary care doctor had made a comment about possibly sending me to counseling, since she believed my pain was psychological. I wanted to just cry. I'm in so much pain and just trying to do everything in my power to be just another normal person and now this?
One of the first things this doctor said to me after we talked and discussed what is going on with me is, "Just because we can't tell you whats causing your pain, doesn't mean it isn't real. You're not crazy. What you feel is real, its just a matter of trying to figure out what it is, and doing our best to help you."
Again, I wanted to cry. I needed someone to believe me, to be on my side and to want to help me find solutions, not just blame mental problems. I just felt this flood of relief. I didn't feel like I was defending myself anymore, I felt like I was working with someone to get something done. He poked and prodded certain spots, and most of them hurt, some way more than others. I'm so tired of tests, seriously. The EMG was the worst test I've ever been through... but they all suck. This one in particular. He hit my sciatic nerve, and walking around for the next hour was torture. It was shooting pain down my leg.
But basically he told me that I have myofascial pain, and he thinks I have benign hyper-mobility. I already knew I had hyper-mobility, but not what kind, I guess. What he said is that my range of movement is causing some of my pain, because my joints aren't supporting the proper type of motion. So I need to go back in to physical therapy (hello round three) and then he said he wanted to do blood work. He's worried I may have lupus.
Hearing that, my heart sank. I know he's only checking, but the idea that I could have lupus hit me hard. I know all the stories, the symptoms, the progression... and I felt fear. IF the test comes back negative (and god I hope it does) he wants to send me in for genetic testing. I have extremely long limbs, and he says that its indicative of a genetic abnormality and might be a sign of a genetic disease.
So all in all, its more waiting. More hoping and positive thinking. More trudging on, and trying to keep myself together. More tests, more worries, more questions than answers, and more hope and fear. If I was religious, I'd be praying.
What I wouldn't give to just be normal...
