Bloody Comcast and Bloody Sheets

I have a very important piece of advice for all my friends: if anyone ever suggests that you have a single-fiber EMG test, politely decline and then run, do not walk, away from that person. The test was a most intensely painful, tortuous experience and although it had (arguably) good results, I'm not sure the experience was worth it.

More on that in a moment -- I need to say something first relating to the title of this piece. We moved into this house in early March, and since then we have lost internet and cable at least 4 times (I have lost track). Comcast is miserable, the monopolies of the cable companies are criminal, and our beloved HOA did us no favors by including Comcast cable and internet in our dues -- we use DirecTV for television and I personally would rather use satellite internet. I mention this now because our internet has been down since it rained (how dare it rain?) on Tuesday when we got back from the beach. How am I supposed to keep up with my 3.5 loyal blog readers if my internet won't stay connected??

Anyway. The EMG test apparently indicated once again that I don't have myasthenia gravis. First, they checked my left arm. This involved sticking a needle into my tricep in two places and asking me to flex the muscle against the needle (this is not easy to do because it hurts immensely and one's natural instinct is to yank out the needle, knock down the doctor, and run away). The needle is hooked somehow to the computer, which has sort one of those lines running across it that you'd think of on a heart-rate monitor. When the needle registers the muscle/nerve behavior that it's looking for (I think the needle picks up the electrical impulse), the line jumps. So the doctor digs around in the muscle with the needle, apparently testing the different muscle fibers, and registers their response on the computer. If you've ever had an unskilled phlebotomist try to take your blood, but miss the vein and go digging around for it inside your arm, it feels kind of like that, only more insistent and you have to imagine the phlebotomist asking you the whole time to conspire to make the thing hurt worse by flexing your muscles.

It hurt so terribly that I was plaintively bleating on the table, 'oh, that really hurts,' or some such thing. That was part involuntary and part intentional, in case it wasn't meant to hurt at all so the doctor would have the opportunity to say, "what? oh, dear, it's not meant to hurt, let me stop immediately and find out what's wrong." He didn't say that, unfortunately, and by the time it was done I had bled all over the sheets.

Ah, but if only that had been the whole experience -- I'd still be bitching, no doubt, but not this much. Unfortunately, the tricep test was only the appetizer. I then spent the next 25-30 minutes with a needle in my FOREHEAD, right in the upper temple, just diagonal from where my eyebrow ends. Same drill -- needle, then digging around for various muscle fibers, and the whole time I'm to improve the result (and increase the pain) by raising my eyebrows and rolling my eyes back as far as they will go. I whimpered and sweated and gasped for air -- I couldn't imagine anything a doctor would intentionally do hurting that much. The doctor kept saying, 'i'm so sorry' and asking me if I wanted to stop. I didn't -- all I wanted was to get it overwith -- but a couple of times he stopped anyway, I think because I was near to hyperventilating, or worse. Lest you think the doctor was incompetent, I have to explain that this Dr. Chaudry is apparently the only doctor at Hopkins who even knows how to do a single-fiber EMG. He's the same fellow who did my plain-old generic EMG while I was an inpatient, and he exudes an air of confidence and skill -- we didn't once suspect it was his fault. Rather, this is just a diabolical test, no getting around it. Luckily, Dave was there (thank God I waited til he got back from his trip), so I had his hand to crush in mine the entire time, although I couldn't see him from where I was lying. When it was over, he brushed my wet bangs from my forehead and said, 'now you know what it's like to be Jack Bauer.' I thought, it's more like knowing what it's like to be someone who met up with Jack Bauer in an interrogation room.

While I was lying there trying to regroup, and Dr. Chaudry was fiddling with the computer, I said, quite honestly, 'please, i don't care if i have myasthenia gravis or not. I just want you to tell me that whatever you've found here today is definitive, so that we can stop all this.' thus it was that i was actually disappointed at first when he said that the test was negative. not only did this mean that we still don't know what's wrong with me, but he said there is even a chance that I still have MG and the neurologists will just have to figure out what to do next. He assured me that Dr. Maragakis (who's lost a great deal of luster in my eyes since he signed me up for that torture session) is the best and will make the right decision.

D and I went, me with a blinding headache and nearly unable to bend my elbow, to the Bayside Cafe in Baltimore's Canton neighborhood and had some crab dip and peel & eat shrimp and watched the thunderstorm on the marina, while we discussed telling all the doctors to go away and leave me alone until after the baby is born and we see if whatever is going on here simply goes away. I think there's a strong urge to take control of my life back, and I also think I'm simply feeling a lot of fatigue around all of these tests and doctors' appointments. Good lord, the ob-gyn is enough on her own! We decided to wait to see what Maragakis has to say after reviewing the results of Dr. Chaudry's test (he said he'd be in touch), but I know that both D and I are ready for a break from all this, even if it does mean a break with walkers and physical therapy and almost constant discomfort. What pregnant woman isn't uncomfortable, anyway? [After our meal, we went to Camden Yards to see an Orioles game. If my had hadn't been splitting and my vision doubling badly, I would really have enjoyed the 7 innings we saw -- the O's stadium has a very nice disabled-seating section.]

I honestly think I have a mild form of post-traumatic stress disorder from all this. Just when I stopped having frightening nightmares and flashbacks about my various hospital experiences, now I am having flashbacks of the EMG test. Good grief!

Luckily, the beach trip was a nice diversion. The house, which has three floors, also has an elevator, which was absolutely key for me. Getting down to the sand (2 blocks away and up & down boardwalk stairs and all that) was quite a workout, but I was comfortable in a beach chair under the umbrella, and a few times I even walked out into the surf on D's arm. I felt a little sorry for myself on Monday morning when D made plans to take the kids to the water park -- I just suddenly felt very left out, and like I want very much to be able to play, too. D helped, though. He let me talk and cry about it, he was very empathetic and understanding, and then he pointed out that (a) I had decided last summer that I was a bit scared of water slides and (b) I wouldn't be sliding on them as a pregnant lady anyway. I felt much better after that.

Tomorrow we're back to the obstetrician, just for a normal appointment. It's at 9:00 in the District, which means we have to battle rush hour (and get up early), though, and I can already feel a grouch coming on. I need a few more languages in which to exclaim, "I AM SO SICK OF DOCTORS!" Otherwise, I am searching for a new physical therapist, closer to home, because my family support structure of chauffeurs to drive me to therapy has finally faltered and so I'm probably going to need to start taking taxis. I think I found one,but there are no openings until July 13, so we'll see about that then. We are also having to gather and provide paperwork to Unum, the company that oversees my firm's short-term disability claims, which of course is loads of fun. The prospect (which I see as completely unlikely) that my claim will be rejected or that in some other way I'll lose my income haunts my dear husband, which I completely understand. Neither of us would like to have to sell this lovely house we just bought. All I can tell him is that every experience I've had with the firm -- including another short-term medical leave in 2003 -- has led me to believe what they are saying, which is that they support me and that I needn't worry about my job.

Today is absolutely gorgeous, sunny and warm but not too humid, for once. I think I'll throw together some lunch (we still have some yummy produce from one of the roadside stands on the way home from the beach) and sit in the sun room to eat it.

One last thing -- N, I got the package. I will be sending you a proper note, but I wanted to thank you promptly for the lovely journal and for the mini-library. Amazingly enough, I only had two of those books already. Thank you!!!