The May Update

As always, I'm probably due for an update. Here's a quick summary of what's happened since last post:

-I increased my schedule to full time, the same 3-twelve hour shifts I worked before.
-I had my NF2 blood draw done.
-I took Brodie to the opthamologist.
-I had a new MRI.
-I saw Dr L.

Work is going fine. I'm exhausted much of the time but I'm getting through, and hoping it'll only get easier. In the meantime, I sleep, a lot. Going back and forth between being up at night for night shift and being up in the day for the rest of life is not as easy as it was before. The other night, after a shift, I went to bed at 9:45, woke up at midnight, and couldn't get back to sleep again until around 5ish. Matt gives me lots of chances to sleep in and get naps!

Still haven't had a patient ask about my face, so that's cool. Really, it's not *that* bad anymore. You can tell something's not right about it, but it's not so obviously "dead". My problems with it are that even though I can move the left side some, the synkinesis is getting worse, it's still kind of stiff, and it doesn't move in concert with the right side so much. If I smile naturally, mostly just the right side smiles, though if I *think* about it I can get the left to go with it a little. It's just kind of aggravating, but whatever - it is what it is.

I had the bloodwork for the NF2 stuff drawn about 7-8 weeks ago (I can't remember exactly). No word on any results yet. I thought it was supposed to take 5-6 weeks, so I put in a call to the geneticist to see if they got anything.

I was wondering how I was going to get Brodie to sit still for her eye exam. As it turns out, the answer is "restrain her". I thought maybe they had special tools they used for kids, but it's pretty much the same. Still, I really liked Dr W and Brodie wasn't *that* upset about the whole thing. She does not have any lisch nodules, which is what they were looking for (an eye thingy that goes with NF1).

My third MRI (six month post op) was the least painful of them all. It seemed to go quicker. I guess because I know what to expect. They gave me a disk of my images which of course I looked at right away and scared the crap out of myself. As it turns out, my head wasn't straight in the machine so what I initially though was a giant tumor right in the front of my head was actually just my eye. At least, that's what I figured out the second time I scoured the images, after crying for an hour about how I was going to die.
I kept the CD for a good week or two, continuing to go over the images over and over again, as if I know what I'm looking at, until finally the NP at Dr F's office called and said "Are you going to mail us that CD?" Oops. I thought it was for me, so that I could drive myself crazy.
As it turns out, they said everything looks fine. Not "normal" of course (you can see where there's a big chunk missing, haha), but no new tumors or regrowth. When I get the disk back, I'll post some pictures.

While I'm sure it's great to have a 'clean' MRI, it still doesn't answer the question of why I still have daily headaches and waves of nausea. And I swear my skull feels different in my left temple, where headaches frequently start. But I guess we'll just follow up again in 6 more months. In regards to headaches, I've now had at least one almost everyday for about a year now. I'm not sure I'd know what a day was like without them.

I saw Dr L last week, and there's nothing new there. He spent a really long time with me to answer my multitude of questions. #1 - It won't mess my eyes up to work in areas with lots of computers and graphs (like L&D). In fact, he said that whole thing is a myth. #2 - My cornea still looks fine. #3 - I don't have any lisch nodules, either. I do have a nevus in my right iris, but that's just an eye freckle, and nothing to worry about. I didn't know people could even have eye freckles, but it doesn't surprise me that I have one now that I know it's a possibility. #4 - Everything else in my left eye looks good, too. I was worried because from time-to-time I have lots of 'floaters' and some white flashy lights in that eye, but apparently the retina and optic nerve look just fine. That's cool with me.

I mentioned needing a neurologist to go to for these headaches, and he referred me to someone, but I just called the office and that Dr is booked until September. I probably should have just made an appointment, as it'll probably take me that long to get motivated to call anyone else anyway, but September just seems to long away. I don't want to establish a relationship with someone who's that hard to get an appointment with, anyway.

So that's about all. Hopefully sometime today I'll get an update on the genetics business, since I'm always thinking I see new 'spots' on Brodie, and last night I definately found a new one - which brings the count to 4 (possible 5? I didn't see one that the dr said she saw) cafe au laits, 1 hypopigmentation spot, and 4 suspicious freckle type spots. :/