Ari & Me -- and The Snapper

I'm snoozing a lot today. It's relatively cold in here, and every time I cover up with my quilt on the couch I fall asleep. No big deal -- for once, I don't have anywhere to go today; no appointments, no requirements. It probably sounds ridiculous for me to complain about demands on my life, but just one appointment a day for a few days in a row really wears me out, and this week has been a busy one. Last night I was so tired I didn't even stay up to watch Jon Stewart.

So, as I've said, it's been an eventful week. On Monday D & I went to Fairfax VA to a genetics lab and had a CVS (chorionic villi sampling) test. This involved a big ol' needle jabbed through my belly and repeatedly into my uterus, where a sample of pre-placental material was gathered. It'll be tested for chromosomal defects and we'll get the results in a couple of weeks. The best part was that we FINALLY saw sonogram pictures of the little snapper, and that was wonderful. I really needed that. [Aside: The Snapper is a great book by Roddy Doyle, made into a great Irish movie. Check it out!] Their machines also created a cool 3-D image of the baby that was extrapolated from the sonogram snapshots -- s/he looks like a little Klingon. :) I was really surprised at how much s/he was jumping around, and I told Dave as much. He said, 'you do realize that at some point I'll be looking at you from across the room and be able to see the baby moving around inside you . . . .' No, the answer was, I don't realize. This is all new to me. Dave laughingly said that sometimes he thinks I have no idea what I'm getting myself into. No truer thing has been said!! Anyway, in a little while we'll know as completely as we can that the snapper is okay -- at least until s/he comes out. We'll also know the gender . . . . I think it's a boy; D says it's a girl. Of course we both just want it to be okay. It's hard to imagine that this child might be graduating from high school in 18 years, after all of this mess.

Brr. It's cold. I just had some really powerful sweet tea from Chick-Fil-A, so at least I probably won't fall asleep again -- for a couple of days. [aside: Nic, every single time I have CFA sweet tea, I think of Selena and our early days at KC; we used to go down to the CFA nearly every day for a huge styrofoam cup of sweet tea -- and usually the free refill, too. How are she & her family doing?]

On Wednesday, we went back to Hopkins to see Dr. Maragakis, my beloved neurologist. He asked a lot of questions about my current status, and then did an exam. His colleague, Dr. Burnett, joined us (his last week before joining the faculty at Vanderbilt, we were told) for another opinion. More white coats with folded arms leaning against the wall peering at the mystery that is me.

Anyway, after completing his exam, Dr. M said that he intends to follow the diagnostic path of an autoimmune disease called myasthenia gravis (MG). In MG, the immune system erroneously attacks the junctions between nerve and muscle. It results in extreme muscle weakness and fatigue. Often it starts in the eyes, causing double vision, and it can also weaken limb muscles and even muscles used in speech, swallowing and breathing. There is no cure, but the good news is that MG can usually be treated such that sufferers lead fairly normal lives with careful management of the disease. My ob-gyn, a font of information, pointed out that Aristotle Onassis had MG; possibly the closest thing I'll have in common with Jackie in my life. [Aside: I read "What Would Jackie Do?" on my honeymoon -- and LOVED it.]

MG was one of the original diagnostic ideas at Hopkins, but in the hospital the blood tests and the electromyography (EMG) and nerve conduction tests that were performed came out negative for MG. Still, he explained, the EMG & nerve induction tests done while I was hospitalized only catch about 85% of MG cases; there is a more specific test (I am still educating myself, but I think it's called a 'single-fiber EMG', and unlike the other EMG I had, it tests the working of one muscle fiber at a time). So, Dr. Maragakis ordered some more blood work, and the more specific EMG, which we'll have done on June 13 when Dave is back from his trip to India and the UAE. He also prescribed a medication called Mestinon, which is used to treat MG. It's a short-acting (4 hours per dose or so) drug that shores up the nerve/muscle junctions. I take it 3 times a day, and after a week or so I should have some idea of whether it's helping. My double vision should improve, if so, and maybe even my leg weakness.

I have no intuition about whether this is the right diagnosis or not. I am also not that bothered by the potential diagnosis -- at least that's how I feel right now. I am less concerned about maybe having MG than I am glad to finally be taking some kind of medication that might help. Of course, it might not help. Either way, it's still going to be a while. Although we are to call Maragakis in a week or so to let him know if the Mestinon seems to be having any effect, we aren't scheduled to see him again until August 1. He just signed my firm's medical leave paperwork indicating an "unknown" date when I might return to work. It might be a very long time before I get back to normal life. It's hard to explain how this feels psychologically: obviously I want to feel better -- to BE better -- but there is also this current of real fear underneath. I am afraid of being asked to do things I can't do, before I am ready to do them. A version of the same thing happens every morning when I have to make my way down the stairs; I have to go downstairs, but it is very difficult and extremely frightening to do it -- every morning. When Dave offhandedly mentions my driving the car again some time, or going back to work, I feel a wave of real fear. Then I decide not to worry about it until I have to. Certainly nobody expects me to be behind the wheel right now.

Speaking of fears. As I mentioned, Dave is going to be on a very important business trip to India and Dubai, for two weeks beginning soon. I'll be spending one week at his mother's house and one week at my brother's. Why is that so scary?

Finally, back to the pregnancy. As far as my ob-gyn is concerned, the pregnancy seems to be going along fine and, pending the CVS results, she sees no problem from all the trauma we've been through over the last 6 weeks. The one obstetrical concern is that on my past couple of blood tests, my liver function numbers were abnormally high, and my blood pressure has been a little high. Apparently there is a risk of something called HELLP Syndrome (any other syndromes? anyone? anyone?); neither Dr. Fraga (my ob) nor Dr. Collea, the high-risk ob-gyn with whom she works at Georgetown, actually think that's what's going on here, but we will be going to see Dr. Collea on 5/30 anyway, so he can try to determine if there's any other concerning cause of the liver function abnormality. My gut says there's nothing to this; almost to the point that I want to cancel the appointment. It's funny how when you're dealing with as much medical intervention as I am -- and as much loss of control over your own body -- you can get extremely stubborn and downright bitchy about exercising control over small things. A couple of times in the hospital I almost blew a gasket over the routine glucose testing. I was so sure I had no sugar problems, and I was so sick of needles, that I just couldn't deal with those 4-times-daily finger pricks. Argh! I know Dave won't hear of my cancelling Dr. Collea, though, and Dr. Fraga wouldn't take kindly to my ignoring her advice either, so I'll go. I'll get to say 'I told you so' when it turns out to be nothing.

Dave and I have been doing better lately. Although we've been fighting/arguing a lot -- just getting on each other's nerves -- at least we're expressing ourselves. I don't feel the distance between us that sometimes exists. We may yet come through this with a stronger relationship. Or at least an intact one.

Well, that's about it for the update. Sorry for rambling -- I guess that despite appearances around here, there's a lot going on. Love to you -- A