Saturday, November 17, 2007

Finishing up with Neurologist Number One

(I am trying to get to the present as fast as I can)

Okay -- so I left Dr. P's office and drove home. By the time I got home, it was clear that my whole left side was numb. I broke down and looked up lupus on the Internez and found that it is a progressive auto-immune disease that attacks your organs and joints.

a note about looking up medical information on the internetz: it is both a blessing and a curse. when I read about the treatment for MS, I almost broke down in tears. It sounded rough. And I worried that I was giving myself symptoms when they kept appearing after I read about them. The only thing that reassured me was that I had blurred vision before I read about it. But I had to say, that when you compared lupus and MS, symptom for symptom, we did have a clear winner.

And Shelley, you are right, Seal (the singer, not the mammal) has lupus, which I did not know. I always thought that he had really bad acne as a teenager. Now I feel kind of bad. But I am kind of glad that I don't have a rash.

In fact, when looking over the lupus symptoms, I don't have any of them. Except dry skin and dry hair, but I am a middle aged woman living in the Southern California Desert. How would I know?

On that Friday, I went in for blood work and donated nine vials of blood. The phlebotomist kept commenting on how very many vials we are taking. I nod and hope that she will finish soon so I can get to work.

I call back the neurologist at the beginning of the week. I am feeling a little better, less room-spinny and have stopped retching when I walk more than 15 feet. I can't walk straight, and speaking is still difficult. I am still exhausted. At any given time, I feel like I could lay down on the floor and go to sleep. Now, my husband feels like this most of the time, from what I hear -- but me? I loathe naps. I don't get them -- I don't understand the need, and I find people who like naps to be baffling. I don't really even like sleeping, to be honest. I would rather read a book.

I keep calling my sister on thinly-veiled pretexts. I just want the contact. I text my husband, saying "hey", for no reason. Rowan emails me daily and I am grateful for the contact.

I am anxious, a little. And restless. And tired. I am starting to feel less numb.

The neurologist prescribed valium to even out my gait, but I don't take it, because she also said that I can't drive for two hours after the dose. Forget that! And also, as I said, the nausea had subsided to a great degree.

I was still dropping things, and stumbling. I was pretty forgetful. I took to carrying a steno book around with me at work, and writing down everything I need to do. Now, I should say that I have a really good memory. As my friend Kim said, I am not allowed to have memory problems, because I am her memory. The patients on my unit come to me and have me remind the psychiatrist what needs to be done. I am my husband's memory.

I went to the jail and did two evaluations, which is very common. When I got home to write them up, I literally could not remember one of them. Not at all. When I read my notes, nothing came to mind. It was awful. Where a memory should have been, there was a gaping void. When I tried to find some little thread to use to work my way back to the memory, nothing happened. It was weird, like feeling along a wall in the dark for a doorway and not finding it. But you know it's there. Ordinarily, I would think of the setting, and in remembering where I sat or what was happening, the memory would come back. This didn't. I started to get anxious, because a really basic skill was letting me down. It took about three days before I could retrieve the memory. Ack.

I got a hold of the neurologist at the end of the week, on Friday -- two days after seeing her. It had been a rough day -- my speech was really off. It was hard to articulate and I was having significant word finding difficulties. She said that the MRA had come in. She told me that three of my cerebral arteries were perfect, but that one of them was kinked, thereby interrupting the blood flow to my brain. This would explain the transient nature of the symptoms. She described the artery as "twisted".

Er. Okaaaaaayyy...

Exsqueeze me? What? I have a twisted cerebral artery? Kinked, even? Doesn't lack of blood kill off brain cells? (after all, I am a trained professional -- I know these things ...)

So, I ask her what does this mean? She says that it is most likely lupus and that she is waiting on the blood tests to confirm it. I am to keep my heart rate down ... no stressing out. No vigorous exercise, no exerting myself. My pulse is to stay under 94. The only treatment that is really possible is to take aspirin as a blood thinner. I am to increase my baby aspirin dose.

But, I say, feebly ... you can't just leave me like this ... can't you fix it or something? She says no, that it is brain surgery and you want to avoid that at pretty much all costs. What about a stent? (A little medical knowledge is a dangerous thing). She says that the artery is too convoluted for anything like that.



So now I have a cerebral artery that is sagging -- like almost everything else on me. I keep imagining putting a little cast on it, so that it can stand up straight.

Dr. P says that I am to relax and take it easy and to not stress about this. She is waiting on the blood tests to confirm lupus and those should be back in about a week.

Goody! Except for being afraid to move my head for fear of my cerebral artery exploding, I am just great.


Rowan said...

Bob, you've really been through the mill over these last few months. So many new challenges to face, and possible diagnoses to juggle.You were fell brave, absorbing the neurologist's words, and discussing stents, and such. The image of searching in the dark corridor for the undisclosed door to a memory is touching and very powerful. You take your readers with you and make what you are trying to make sense of yourself, accessible to us. When you get past the bump in the road, we will surely buy yer book.

Nine vials, lassie...that is a loooot! It is at times like these that you need yer virtual claymore in yer 24 bag. Is it still going strong? Yer Haverers are aye praying fur ye, and in yer corner.

shelley said...

Okay...I'm a slow-learner...sorry, Bob.

I thought all this was happening more in the now...rather than the then.

I think in my effort to catch up on all your writings, I must have skimmed over that.

So...may I ask...are we slowly catching up on news you already have?

(Again, sorry for being such a dunce.)

Dr. Bob said...

Dunce? Hardly.

It was not especially clear, to be honest. I stopped the blog, deleted it, and had to re-do. Will explain why ... 9_9

(Rowan, the 24 bag is still in use and thanks for the prayers!)