Saturday, May 10, 2008

I feel lesion-tastic!

I am going in for my six month return MRI, to see how the little fellows are doing. It is funny, but I feel pretty darned good. I have noticed that I still have some memory problems -- I have just taken to writing every.thing.down. Everything. I have a little steno pad that I use at work now and I write down everything that I have to do and what I have done, because I will completely forget things otherwise.

The memory loss is funny, because it is like the information never, ever existed. I wonder if what is damaged is my ability to create a little hook for grabbing information. I had to write a court report the other day and thought that I was going to have to write it from scratch, rather than just update and amend. One is considerably more work and I was not looking forward to doing it. Imagine my pleasure when I found a very recent copy of the same report, dated not three weeks before! Whoo hoo!

And then I opened the report and found it only half written. And then I scrolled down and found my name at the bottom. I started this report and have absolutely no recollection of having done so. None.


Things that big don't happen very often, but when they do, it is just surprising. I have always had a really good memory, and even if I don't remember things right away, if I see something, it will jog the memory loose and I will remember it. Odd when it doesn't. I think, if I took a while to think about it, I might remember starting the report, but it is not worth the effort, I don't think.

I will just keep writing stuff down in the meantime.

Other than that, just some slight problems with articulation, the occasional weird cognitive thingy. My favorite recently was when I was driving on a well-known stretch of the freeway and had no idea where I was. I could tell you I was going east on I-10, because I knew the exits, but the part of my brain that knew it was not sure. I had no sense of recognition. I actually saw the sign that said I was on the 10 eastbound, and it still felt foreign. It was a little scary, because I felt like I was on the wrong freeway. Even though I knew I wasn't. Weird, no?

I wonder how many lesions I have now?

I have evaluated two different people who have said that they cannot work because they have lesions in their white matter. One had six and one had 12.

At 20 and counting. Down, I hope.

Pray for me in the coming month. Will keep you posted.

Wednesday, December 12, 2007

Why I will never be on Oprah ...

About six or seven weeks ago, when I thought that I had a kinked cerebral artery, it was a bit hard to deal with. I had a sort of hard day and made it home, really exhausted. I crawled into bed and watched the day's TiVoed episode of Oprah.

I looked at the title with some dread -- Guests who are facing death ...

I felt a horrible fascination, because although I had not been handed a death sentence, the whole "your cerebral artery is kinked and just keep your heartrate down and we will look at it again in six months" felt like a death sentence. A teeny one, perhaps.

Not to sound all melodramatic, but I felt like there were things that I was supposed to do -- that God had called me to do, and I just could not see how I was going to do them with my brain acting up. How was I going to serve in my current shape? I felt like something was dying ... maybe my thought of who and what I was. Not feeling well and being exhausted was a huge time-waster. Literally.

At that point, I was barely able to think -- at least that is how it felt. I was making mistakes in my work and I was having to proof and double proof. Just the day or two before, I had left the wrong name in a report and the attorneys were arguing over the fact that the whole damn report was therefore suspect. Thankfully the judge called it a simple mistake and had the hearing go on. I read another report that I had been working on the night before, and there was this passage that was pretty much gibberish, one that I had written while really tired.

I make mistakes, sure. But I was making a lot of them. A lot. I was a little scared. And I could not figure out how, for the life of me, I was going to live any kind of productive life with a wonky brain. And no energy.

So, I watched the Oprah episode with horrified fascination. The first person was a woman who had terrible cancer and she was taking control of it with diet and exercise and steely resolve to live her life.

The second was Randy Pausch -- you might have heard of him. (The video is a little long, but worth it.)

And I watched this episode of Oprah and felt sad. Of course, I was sad for these people and I admired their strength. But I also felt tired. Because I was not feeling like someone who was overcoming a challenge. There was no enemy to fight. And if there was an enemy, I could not see it. I was just walking through my day, a little dazed and confused.

I just didn't know what to do. How do you fix an artery? Detoxify? Exercise? Walk on tippy-toe? What the hell I was supposed to do. I thought that if I just knew what I was supposed to do, I could get started on it. But there was nothing to do to start getting better. Wait for six months? Hope for the best? Hope that my artery did not blow and leave me a vegetable or something?

If I had to describe myself, I would say that I am generally a person who gets things done. I have a hard time taking no for an answer -- which has its upside and downside. I generally take a "no" as a "hmmmm, let's think about this -- there has to be a way". I am a back-door finder, lateral-thinker and generally-obnoxious-pest when it comes to getting things done. I have learned to be more flexible, but persistence is not a problem for me. What I am not good at is waiting. Or doing nothing.

I felt crabby and annoyed -- thwarted, I think more than anything else. My life, the one that I thought I was supposed to have was slipping away and I could not see the path that I was going to be on. That path made no sense to me. I did not know how I had been so mistaken in my beliefs about what I was to accomplish in this life. Because a torqued cerebral artery was going to blow a lot of things all to hell.

I literally could not wrap my brain around the fact that I was now impaired.

Listening to the guests on Oprah, I just felt tired. Heck! It was eight o'clock at night and I was in bed! The only thing that had allowed me to get home that night was the thought of being prone. I did not talk to anyone when I hit the door and staggered into my jammies. I think I actually was groaning in relief to lay down.

I felt like I was not living up to my beliefs. I think that most of us would hope to be the Resistance Fighters rather than the frightened townspeople -- the workers on the Underground Railroad, not the people in their houses, listening to the bloodhounds. That when the chips are down, we would scrape up something and face the inevitable with some courage.

For me, I hoped that I would step up for what I believe in when the pressure wass on. You see, I really believe that God's grace is all-sufficient and all of His promises were there for me, and none of that had changed. But I didn't know how to be sick and I didn't know how to be so tired.

So, looking back I can understand it all a little better. Part of the problem was that diagnosis was wrong, and it felt wrong. But I am trying to understand what I am supposed to learn from that little episode, because it was disconcerting to say the least.

The problem was that I still felt certain about what it is that I am to do in this life, and I could not see how God would throw such a roadblock in the way. There was a way around it, or under it, or something, because I am sure of the call that God has on my life.

So what did I learn? That God's call is sure. I am as sure of that as anything I have ever known. If it had turned out that I had a kinky artery or lupus or MS, God would have given me a way to serve, despite the obstacles. And I would have known that it was not because of my strength, but because of His. But I knew that already.

Because I am just not Oprah material.

Well, I guess I have to change the name of my blog...

'Cause I don't have MS.

I got a call from the neurologist because they had a cancellation and I was on the earlier- -appointment- waiting list. They asked if I wanted to come in, and I said "yes!" because that would free me up on Thursday, which would have been a real blessing.

So, I went into the exam room, sat on the plastic couch and jiggled for the ten minutes it took for the neurologist to get in there. I texted my sister that I was woozy. She advised that I put my head between my knees and then thought that would be funny if he came in while I was like that. She has a off-kilter sense of humor. She gets it from me.

The neurologist came in, medical student in tow. The neurologist is small -- shorter even then me. I could take him down with no effort at all. It is disconcerting. I bet he enjoys stabbing people in the back with great long needles as a way of compensating for his height.

The medical student, on the other hand, is tall and has to fold himself up, storklike, in the plastic chair in the corner.

Well, Dr. H asks -- how have you been feeling? I tell him that I am feeling much better, actually. I estimate that I am at about 80% of normal right now. Some slight cognitive difficulties, some hesitation in my speech, still dropping things, small lack of coordination, but my energy is almost back (except for the occasional bad day). My gait is still a little wobbly, but only I notice it. The only thing that is a problem is that my left side is still tingly and numb. And my right side has sporadic numbness. But now that I am used to it, I just walk a little more carefully down stairs and hold my coffee cup more firmly.

He looks at me for a moment and asks questions about the numbness that I can't answer, like -- is it constant or coming and going. I don't know, because I think I only notice it when it intrudes into my daily life.

The neurologist goes over all of the tests that were done and what they tested for. He even tested for syphilis, because you can have odd neurological symptoms with it. I mentally roll my eyes, although if I do have syphilis, I will also be a very rich widow. Because I would kill my husband in an extremely clever way, get away with it, and spend my days on a beach in Latin America with a handsome young pool attendant.

But I digress.

So, he goes through the results. There is nothing wrong with any of my arteries -- in my head or in my neck. (Whew!) I don't have lupus. I don't have MS. Or Lyme's disease, or Shogren's, or sarcoidosis, or any rheumatoid disease. I don't have any of the reversible dementias.

Okaaaay ...

What do I have?

The neurologist looks at me, and pauses. He says that he went back to my earlier MRI and counted the number of lesions, because he wanted to quantify the difference between that one and the second, more recent one, just to get an objective measure of the progression.

In the first MRI, I had forty lesions scattered throughout my brain (remember, lesions are little areas of scar-tissue).

In the second MRI, I had twenty.

I looked at Dr. H. He looked back, clearly at a loss.

So, I say. How does that happen? Lesions don't heal, do they?

Not really, he says. I don't know what happened.

It couldn't be the fact that everybody I know is praying for me? I ask with mild (well, maybe not exactly mild) irony.

I look at the neurologist.
I look at the medical student.
We all sit for a moment.

Dr. H says that he thinks that I am clearly better and that we should just monitor the symptoms. I am to make an appointment for three months later and cancel it if the symptoms stay the same or get better. If they get worse I am to call him immediately. We will have another MRI in six months to see what happened with my brain.

I say okay. I am still trying to understand what he has said. It strikes me that the MRI machine that was used for the second set of scans was a more powerful machine than the first one -- it was a Tessla 3 or somesuch, but it was only a month old, and the techs had commented that it was much more powerful than their old machine.

Which makes the finding more powerful, in my opinion, as I might have had more lesions than forty to begin with, but the older scanner would not have picked them up.

I ask what he thinks has happened -- the neurologist says that there was clearly some injury to my brain and that the lesions are resolving.

That about sums it up, I guess. He did not know if it was an infection or what, but whatever it is, it is more than half gone. I ask what could have caused it, and he is at a loss, because MS is about the only thing that remotely would resemble what has happened, but all of the tests came back as negative.

He says that there is a remote chance that I have MS, but even if I did, it is a really mild case and he would not treat it, because the treatment is pretty aversive. And my brain seems to be handling it all pretty well on its own. It could be some sort of autoimmune reaction, which would not surprise me at all -- it would be just like my body to begin attacking itself.

I tell him that I am just going to treat this like an autoimmune process and take better care of myself. He suggests that I stop working so hard. I mentally roll my eyes ... the phrase that all physicians say when they have nothing else to contribute. And stop smoking and lose weight. (I don't smoke -- that was just for irony's sake.)

But ... I am getting better.

As I leave the office, I think about it, and I can pinpoint the day that I woke up, feeling better. It was about three days after seeing the first neurologist. The nausea was gone and my gait was off, but nothing near what it had been. From that point on, except for the numbness, I can see that I have been feeling progressively better, with only mild ebbs and flows in the severity of the symptoms.

So -- I am struggling to understand what this whole episode was about, in the bigger picture. What God was doing through me, what I was supposed to learn as I went through this. I am still pondering it, but I will tell you the first two things that I know.

First -- God is a God who can heal brain lesions. Because they generally don't heal all that well. I think you can have some slight healing ... but not a lot. The brain re-routes function more than heals lesions, I think. But that is not an absolute fact -- it is just a vague recollection.

Second -- God honors prayer -- because I know, I know, that the prayers were part of the healing. And God will fix things even when you can't pray for yourself -- that is why He wants us to pray for each other -- because He knows that sometimes we are too weak and afraid to pray.

So, that is the first thing that I know, but I have been pondering and I have a couple of other thoughts percolating.

Am I allowed to say "Woot!"? It is, after all, the word of the year.

Monday, December 10, 2007

So, how did I handle the thought I might have something wrong with me?


Not as well as I would like. As I have said, my first thought was being grateful that I didn't have a brain tumor or something. Once I got past that, things went a little downhill, I fear.

Let me get out of the way what I think was an appropriate reaction. I didn't ask "why me?" Because, let's be honest, why not me? I don't think I have a special dispensation that keeps me from having bad things happen to me. Getting upset with God felt like a millionaire whining that they were over charged by a few bucks. In actuality, if someone was going to have a medical problem, I would be a good candidate -- I have good social support, good medical insurance, and flexible work options. I am not a single mother who will have no one to watch her kids if she gets sick.

But my nose was definitely out of joint. I remember looking at my toenails and thinking that I needed to trim them. I was immediately assailed with the thought that I wasn't going to do it. I was going to let them grow until they clacked on the floor when I walked. So there! And shaving my legs? Ha! No way!

I texted my sister and told her I was never going to cut my toenails ever, ever again. "Me either!" she wrote back in true sisterly solidarity. "We will have long toenails together!"

I felt a little better.

So, how did I handle the possibility that I had a debilitating neurological condition?

Well, I shopped on Ebay, for one. It is funny how, once you start looking around, there are all kinds of things that you never knew that you needed that suddenly make a good deal of sense. Like the antique spinny condiment holder.

I thought that I would get it and put little jars in it for office supplies. You know, for paper clips and stuff. Today it looks like this ...

Sam has taken it over and I think I like his use of it better. He puts pictures in there for me. My favorite is this note I found a couple of days ago.

"I am all ways here for you, siad Sam
Love, Sam"

You can see why I don't have a whole lot to complain about.

The metal cigarette case that I thought vaguely would make a nice card case (I never have a business card when I need one) didn't. It was cheap and nothing like the picture. It wasn't worth sending back. Anyone need a cigarette case?

And I got some nice odd rings. I don't know what the sudden fascination was for rings, but there you have it.

And I got some Christmas presents. Ebay for Everyone!!

My daughter noted darkly that I Had a Problem and accused me of being addicted to Ebay. I loftily informed her that it was an upswing, but any deviation from my normal not-buying would be exaggerated.

And I went through a book buying phase from Amazon. I completed my collection of books on treatment of schizophrenia and the history of mental health treatment.

In addition to my odd spate of shopping (believe me, I am not a big shopper), I felt crabby whenever I saw someone doing something physical -- like running. I would think, snippily, when seeing a jogger -- "well, isn't that nice for you."

I think I was angry. Not at my fate or anything, but at my body. It wasn't enough that it was getting older and wrinkled, now it had to become a major topic and time-waster. All of the normal betrayals of age were driving me nuts. I hated the way I looked. I hated the way that I was tired. I hated that I was gasping after walking up two flights of stairs. I tried to line dance and almost fell over. Every time I dropped my keys or lost something, I was just soooo irritated.

And I regained the five pounds that I had lost, plus two. And I didn't care, even when I had to buy new jeans because the old ones didn't fit. In a size that I have never been in before. My body deserved stretch jeans. Ugly ones at that. I almost got a pair of 80's acid-washed tapered jeans, but stopped short of that. A moment of sanity.

And I was getting these little weird cuts and scrapes, and because of the aspirin dose I was taking, they weren't healing. I was at work and I fell into the gate and scraped my arm and bled copiously for minutes. I don't know what I did on the unit, but I was walking around with a scrape that it practically took a tourniquet to staunch. I am afraid that I am going to get MRSA, because we have periodic outbreaks of it, which is fairly disgusting. Kim, my friend and co-worker, looked at me in shock the other day and said, "What happened to your forehead!?" It was bleeding ... just lovely. And not a little.

Ewww! Ewww! Gross!

Stupid, stupid body.

Now that I am feeling better, I am less annoyed at how my body is functioning, but only just.

So, if I shopped and gained weight, what didn't I do when confronted with the possibility that I had a debilitating neurological condition?

I didn't pray.

I just couldn't.

About three weeks ago, I finally confessed this to Kim, because I knew that she had been praying for me. She asked me why I couldn't pray, and I struggled to articulate it.

I told her that I just felt like it was so ungrateful to ask for God to heal my body. It seemed petty and unnecessary. And I could not even consider getting those words out -- they lodged in my throat.

"God, I know that You have given me so much that I could never ask for anything else, but please take this one small thing away from me. I know that other people are really suffering, but this is inconvenient. I am tired. And my leg is all tingly!!"

And I know all about how we are to ask for everything and that God knows what we need before we even ask it, but I just couldn't do it. I felt weird enough asking people to pray for me.

I think that part of it is that I see people who are suffering more than I could imagine handling, every day. I know people who are looking at a life of imprisonment, who suffer from voices that torment them, from paranoia that causes them terror that I cannot imagine.

And it is not that I think Christ would grudge me the request. And I know that I am to lay all my burdens down at His feet, for He cares for me. I know that. Heart, mind, soul, spirit and to the bone. I know without a doubt that God loves me, because I can see it in all the world around me, every moment. And that He ardently desires all that is good for me.

So, why couldn't I pray about this? Not even for healing, but not at all. It was like a topic that I couldn't even broach.

Of everything I thought I would ever, ever do, this is not one of them. It never crossed my mind that I would be unable to pray. I felt mute. And my silence surprised and disappointed me.

So, the other day, I finally managed a small, tiny prayer, because Kim was right and she had taken me to task.

I just asked for Jesus to walk with me. That is all. But I knew He was already, but He likes to be asked, I think. And I said that I was grateful for His goodness.

And I felt better.

I still don't know why I couldn't pray, but I think I am past that now. My prayers are about the things that are really important -- my family, my patients, the things that I am grateful for. And I can say how grateful I am that Jesus is with me in all things -- this no more or less than anything else. That is a truth I can manage.

I have been listening to Jonny Lang, and his voice suits my soul right now. It is sweet and raw and he has a lovely, surprising falsetto that just pierces me.
Enjoy ...

Wednesday, December 5, 2007

Possessing my soul in patience ...

... is not one of my strong points.

I called my neurologist about the right-foot numbness and he finally called me back. His suggestion was that I "monitor" the situation.

Okaaaaaay. Will do.

This is neurologist-speak for "Gee, that is weird. Hmph!"

While I had him on the phone, I asked him if he had all of the results back and he said that he did. He was clearly reluctant to discuss the results, but I admit that I pressed him. I asked if there seemed to be a diagnosis and he said that things were not clear.

Not exactly what I wanted to hear. He said that we would talk at my appointment (which is next Thursday). I asked if there were any other tests he wanted me to do before then, and he said no -- the work-up had been thorough.

He said we would speak more when we had more time to go over the results. I suppose that I can wait for another eight days. Fishing for more information before hanging up, I asked again if there would be any possibility of treatment starting soon, and he again fobbed me off.

I called my sister and, after commiserating for a bit, she said that maybe the news was bad and he did not want to go over it on the phone.

Which had not occurred to me.

"Thanks!" I said ruefully. "Hey -- I'm here for you" she said. A little grimly.

So that is the update for now. I bet I don't have anything. I bet I don't have MS or lupus or anything. I have some odd little lesiony thing going on that is not treatable.

In reality, that would be okay. I have learned to pay attention when I hold things that are heavy or spillable. I drop my keys when I unlock the door and the word-finding difficulties are still there, but they are minor, compared to a month ago. The numbness has subsided to a low-level tingle and I am careful to use the handrails when I go down the stairs. Overall, I feel much, much better and if this is where I end up, that is certainly manageable.

So, happy December to all.

Thursday, November 29, 2007

All of my tests are done

...Let the waiting begin!

This part is a little funny. In general, I am feeling much better than I was a month ago. The only new weird symptom is that my right foot has decided to join the left side of my body in numbness-solidarity. I guess my body is Sticking it to the Man!

It feels like I am walking on really big, squishy slippers. I notice that I am more worried about falling down. I have this mental scenario that I am going to walk down the stairs, miss my footing, grab for the rail with my numb left hand and go falling down roly-poly, pell-mell, tumble-bumble, down to the bottom of the stairs.

But I haven't done so.

I did, however, show up to my MRI and MRA a week early. I showed up last week, having mistaken the day. This is the kind of thing that is driving me absolutely nuts. I am forgetting simple things, which is not really like me. I lost my ATM card, which is an enormous pain in the patoot, because I cannot deposit my paycheck. Of course it will take 5 working days to get a new one.


Anyway, I see the neurologist on December 17th. Armed with all of the test results, maybe we will have a diagnosis.

Wednesday, November 21, 2007

Happy Thanksgiving!

I am taking a moment to give thanks.

For my salvation
For my family
For my children
For my friends
For my work
For my health
For the lovely haverers and their prayers, wit, and concern

I am everlastingly grateful.

And Rowan, we do indeed have wonderful pecan pie (not a fan of punkin, sorry to say). I will bring you one when I come out next. You bring the vanilla ice cream. There is always a place at the table for you and yours. And Bama, oooooh on the laptop. And I wonder what Shelley is baking this year. I still remember her baking from last year -- I need to make a chess pie, for sure!

Much love and Happy Thanksgiving to all!