Myasthenia Gravis

Yesterday I had two doctors' appointments -- a follow-up with Dr. Witham, the surgeon who did my diskectomy, and a consultation with Dr. Collea, a high-risk ob-gyn at Georgetown to whom I was referred by my ob-gyn. The surgeon said that, with respect to those symptoms I have that are related to my spinal cord injury, he would have liked to see more improvement. He sees three possibilities: (1) it might simply take longer for the injury to heal -- he said it can take up to one year sometimes; (2) some of it might never heal -- especially numbness in the hand; or (3) the surgery did not sufficiently reduce the pressure on my spinal cord, and additional surgery might be needed to continue my recovery. Another MRI would be needed in order to determine if the spinal cord is still under pressure. D and I are currently of the opinion that we should forego another MRI until the baby is born. Even if additional spine surgery is needed, we would not do it until then, anyway, now that I am out of imminent danger. So, our current plan is to wait and see a while longer -- and hope for continued healing. The good news? My left tricep is stronger. :)

The obstetrician had a couple of recommendations. First, he strongly suggested (as in, beat me over the head with it) that I not continue my efforts to wean myself away from using the walker (which he kept calling a "stroller" - kinda funny). He said that to do so is very dangerous, and that especially as the baby gets bigger and my balance is thrown further off, it will become even more so. He said that eventually I might even want to use a wheelchair any time I'm outside the house. He also said I must be very careful on the stairs. Finally, he said that I most likely would not have the strength or stamina for labor and therefore he would recommend a planned C-section.

In other words, Dr. Collea was full of information, but he was not overly insightful about how his pronouncements might affect me psychologically. I'm still processing what he had to say-- i was pretty surprised. I hadn't even considered the possibility of a C-section, for example, and I was disappointed at the thought that somebody might cut me open again. Sigh. I decided, in the end, that it's a long time til delivery, so I won't worry about that yet.

So, myasthenia gravis -- is that what I have? There is very good information, if you're interested, at the web site of the Myasthenia Gravis Foundation of America, www.myasthenia.org. Again, I don't seem to have any intuition about it. It certainly seems to explain my double vision -- and maybe my walking -- but why isn't the mestinon helping? Dr. Collea, the obstetrician, said something that I found oddly comforting. He said, "You know, whatever is wrong with you -- it's either going to go away, or, if it's something serious, it will manifest itself such that everyone will know what it is and how to treat it. You won't be in this undiagnose-able limbo forever."

Naomi and Ruth

I keep thinking about Naomi and Ruth, the Biblical standard of mother-in-law relationships. What a powerful example. I really lucked out in the in-law arena, but would I follow Dottie anywhere if David and Jim were both gone? I think I would, actually. Or if not follow, at least team up for support. Your people shall be my people.

There's Cockfighting on TV There!

Well, folks, here I am in New Market, MD, at the home of Jim and Dottie. I managed to find a nice girl to cat-sit for Oscar at home, so although I miss him at least I'm not worried about him. We've set up a stool and hand-held showerhead here, AND Jim had another walker left over from back surgery he had a few years ago, so I have a walker at the top of the stairs and another at the bottom, which greatly increases my mobility and independence. I've been eating like a (pregnant) queen -- Dottie is a great cook -- and aside from replays of fruitless discussions about childcare options for the new baby, I think I am going to be completely comfortable here. [These discussions -- a generous term for lectures which boil down to Dottie's strong dislike for day care centers and her preference that I stay home -- are fruitless not because I disagree with her, but because I have to make this decision with my husband, not with his mother, and his opinions are very different.]

I've been feeling pretty strong lately; I still walk in that stumbly, cripply way that one associates with MS (or MG, I guess), but I feel less weak in the leg muscles. One unfortunate new thing is a powerful headache I've had off and on for three days. I thought I was suffering caffeine withdrawal because I'd been allowing myself sweet tea, but now I'm not so sure. It actually woke me up in the middle of the night -- that's a pretty serious headache.

Dave has phoned a couple of times from Manila. (I don't know if I mentioned here that the CEO and COO added Manila to his trip -- since he'd ''be in the area.'') E*Trade set up a VOIP for his computer, so he can call me (or I, him) anywhere around the world and it doesn't cost any more than calling to or from his office in Arlington. It works very well -- clear reception, etc. The only down side is a slight time-delay, maybe 1 or 2 seconds, but that just makes us feel like Katie Couric and Matt Lauer. It is very good to talk to him -- makes me feel like I'm with him. Lord, am I always going to be this way about his long business trips? I hope not, because I feel a bit ridiculous. I'm chalking it up to a combination of pregnancy emotions and recuperation vulnerability. And with any luck, those two factors will never combine in my life again.

Lest You Fail to Recognize Me

Today, I'm a bit of a grouch again. I just found out when my mother called. I heard the testiness in my voice, recognized my own resistance to her reassurances, felt my impatience with her story of falling off the bottom rung of a ladder at work. Maybe it's because I started talking about going to Dottie's while D is away. I really don't want to go away from home. And if Oscar the cat can't come with me, I will be upset. See? Foretelling doom already, back to my old pessimistic self.

Right now Oscar is lying on the couch next to me, with his hindquarters pressed against my thigh and his eyes half-closed while his front paws knead the edge of the quilt I use for naps. I read somewhere that cats who are prematurely weaned take up that kneading habit as a comfort -- and even though he's more than 3 years old Oscar still does it. At least I quickly taught him not to knead me -- he uses his claws.

I might also be grouchy because I'm in a lot of pain today. My torso, which had started to improve, seized up on me again and has been really hurting today. Or maybe the cognizance of pain increased as the good tidings of motherhood subsided; chicken or the egg. After all, look at what I entitled yesterday's blog entry.

I have two novel recommendations: "Thirteen Moons," by Charles Frazier, author of Cold Mountain, another book I loved, is equally wonderful. Of course, he writes about my beloved Appalachian landscape, and about a time period and people that fascinate me, but his prose itself is so beautiful, so surprising and new and clever, I know I would love it if he were writing about earthworms. I finished Thirteen Moons the other day and just adored it. The second is a novel I'm still in the middle of, "Saving Fish From Drowning," by Amy Tan. Like the other book, I bought this one having heard nothing about it before I saw it in the store, knowing that I would enjoy something written by her. There are a few authors like that -- I always love them.

Time for physical therapy. More later.

Pain? What Pain?

We got the results from the CVS test a bit early -- the baby is 100% healthy, and it's a girl! We are overwhelmed with relief and happiness. :)

Nothing Yet

Nothing yet. No obvious effect from the medication, no results from the CVS test, no preparation for being gone for two weeks (can you say 'denial'?). Nothing yet.

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

Even Sick of Star Trek Reruns

First -- one good thing about recuperation: The Ellen Degeneres Show.

Second -- has anybody seen Grey's Anatomy? Is this another one of those shows like West Wing that I missed forever and only later figured out was really wonderful?

Third -- who in hell is Kanye West? I don't care enough to Google him.

So, week 4 of recuperation begins; day 36 of this little adventure, all in all. No big changes, although little changes are happening here and there. [I notice them because I've learned that "recuperation" is French for "obsessing about every neuron and corpuscle." (Corpuscle?)] My eyes seem to be wavering; sometimes I see one image in the main part of my vision and it doubles only in the periphery, while other times it's double all around. I'm still very weak first thing in the morning or after long periods of inactivity, but now there are times when I can walk a few steps without the walker. I'm off the oxycontin now, relying only on Tylenol, so sometimes I hurt a lot. The vice-like pressure around my rib cage is probably the worst part now, and the physical therapists are working hard to try to loosen that up. It feels like my ribs are encased in concrete -- and according to Eleni, my brilliant PT, they are in such deep muscle spasm that they may as well be. My left hand, forearm and torso are still very numb and tingly and I still don't really have use of the hand. The incision, which runs horizontally across the front of my neck, has lost most of its surgical glue and hurts some of the time -- not as bad as you might think. My neck aches across the back and my chest just below the collarbone hurts to the touch, but in total the actual surgery pain seems not too bad. And, of course, I know that will heal, which is more than I can say for everything else that's going on with me.

Next up is our prenatal appointment on Friday -- our first one, as the original appointment was preempted by my hospital stay. I don't really have much to say about that. I'm not sure if you'll understand, but I have so many emotions wrapped up in finding out whether the baby is healthy, and so many fears about my own & Dave's capacity for hearing any bad news on top of what's already happening, that I am sort of setting the whole thing aside and just not thinking about it. I think the reality of the situation is that we won't have a clean bill of health for the little one until we can have an amniocentesis -- or maybe a CVS test, if I'm not already too far along in my pregnancy to have one. I had a lot of scans, xrays, drugs, trauma, stress and surgery. It's hard to experience unmitigated optimism.

After that, back to the neurologist next week.

Psychologically speaking, this experience is beginning to weigh on me a bit. I started feeling depressed and a bit hopeless (is it possible to be "a bit" hopeless? probably not -- more like being pregnant -- either you are, or you aren't). Going out to lunch on Monday with Brett helped a bit. Talking to my therapist (my psychotherapist & I have been doing sessions on the phone) and a couple other friends on Tuesday helped more. I found myself actually doing my exercises like a good invalid. Wednesday, I backslid a bit. Today, well, we'll see.

It's sunny and beautiful outside today -- if a little too humid. This morning we've had a bunch of contractors in and out of the house working on punchlist items. Oscar the cat is very offended at having been locked in the study all day. They're all gone now, though, and Oscar is free. And it's time for lunch. More later.

A