Thursday, November 29, 2007
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
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!
Monday, November 19, 2007
Anyone who tells you that they are no big deal are big, huge, enormous, dirty, rotten, liars.
To backtrack a little, my husband has learned something about me through all of this. I will say that things are no big deal and then resent the fact that he is not there to hold my hand.
When I originally went to the emergency room about five or six weeks ago, I firmly told him that I was fine. And then felt put upon that he had not shown up anyway. Now, to be fair, when I say that I am fine, at that moment, I generally mean it. It is later that I realize that I really wanted the help.
So when I went to the neurologist, I told him, and meant it, that he did not have to come, but I admitted that I needed hand holding for the lumbar puncture. That morning, I told him that he didn't have to come, and he wisely ignored me. He took the afternoon off and we drove out to the office. In order to be efficient, we get there a little early and I get five more vials of blood drawn and an x-ray. We go upstairs to get the LP (that is a lumbar puncture for the uninitiated).
I don't know why I didn't know that the neurologist was the person to do the procedure, but I wasn't aware of that. It had come to me, slowly, over the past week that someone was going to stick a real needle in my real spine. I was not looking forward to it. I was trying hard to not be scared. My goal was to not make an utter spectacle of myself.
I asked him if he had received the notes from Dr. P and if he had seen all of the images on the MRA. No to the first, and yes to the second. He had seen my arteries and saw nothing wrong.
So, just to be clear, you think that my arteries are completely normal? Yes, he says.
Great. now I need a third opinion. One of my neurologists is not very competent I fear. Please let it not be the one who is going to stick a needle in my back and risk paralysis and brain herniation.
Your brain can herniate during a spinal tap. Just so you know. It is very rare and they monitor your spinal fluid pressure, but your brain can get sucked downward. I think it is fatal.
So, the neurologist and the medical student who is going to observe leave the room and I get dressed in the backless gown. I elect to leave on my underwear, but if I had been thinking about it, I probably would not have worn the bright green undies. At least they were clean.
I get draped and betadined and it is explained to me that they will numb the area first.
You know how when you get dental work done how the novocaine injection is painful all by itself? The same was true for the lidocaine, too. I curled up into a little ball and they injected the painkiller. I would like to say that the idea was worse than the test, but I think I would be lying. My sympathetic nervous system kicked in and I sweated so heavily that I thought that I was going to slip right off of the table. I finally had to ask my husband to put his hand under my feet to keep my legs from slipping apart. My nervous system was not fooled by the lidocaine.
This is what the procedure looks like.
But more creepy.
Anyway. I got through it all right and an eternity and four vials of CSF later, we are done. After each vial is filled, I can feel the slight jerk as it is removed and can hear it being capped.
What is funny is that we are handed the bag with the vials, just like it was a Happy Meal and were told to take it downstairs to the lab. The physician handed me the bag with the vials of precious CSF and I promptly dropped it. Because I have been dropping things a lot.
I looked at my husband and he looked genuinely horror-struck. I don't think I have ever seen that look on his face before, but now I know what expression he will have if one of my limbs drop off or something. I think that he thought that they had shattered. However, the vials are made of plastic and no harm was done.
The CSF is crystal clear and surprisingly pretty. It looks like water. I had thought it would be cloudy, but it isn't I get one more blood draw down stairs and we are done for the day.
We stop and have delicious fish tacos at the place where I used eat when I was a graduate student. I am laying as flat as I can, because my sister has admonished me to stay flat. Both of them have called to see how I am. I don't have a headache, but I am thirsty, but I think that is psychosomatic.
So, that was last week. I am now all caught up to real time. Tomorrow I get my last tests, the MRI and MRA. My back is still sore from the LP, but now it just feels bruised. It hurt for longer than I would think, given the fact that it is just a little puncture. The neurologist told me I could go right back to work but to avoid heavy lifting.
I was in Wal-Mart two nights later, bent over, lifting a 12 pack of Diet Dr. Pepper, and I had an image of my back springing a leak like a garden hose. I unobtrusively felt my back, but it was dry.
I am in a lull right now. My symptoms are pretty much gone, which the neurologist would say is consistent with MS -- symptoms for about a month, and remittance.
If this is as bad as it gets, I think I will be fine. I am tired, but maybe the physician will put me on speed or something and I will lose weight and be more peppy!
A girl can dream.
Well, I didn't do so well, as you can probably guess. I worried that if I bent my neck the wrong way that my head would explode.
It didn't. And, yes, I know that this not the right "exploding head" image, but I love Heroes.
The good thing is that my husband took me away for a weekend for my birthday and got me a camera. I will put up some of my favorite shots on SA in a couple of days.
The bad thing is that I was a bit tired and woozy. And, let me just say, the whole "keep your heart rate down" thing is putting an extreme crimp in my style, man. A romantic weekend is certainly difficult when you are worried about your pulse.
But we had a lovely time. Except for Sunday morning when I could not speak. That was a bit unpleasant and I think I lost it a little. Good thing that I am weak, because hitting the door was more sound and fury than actual damage. As we left the hotel, I noticed that my leg and arm were swollen, and I was feeling distinctly uncomfortable, because edema is generally a bad thing.
I deleted this blog, because I could not have a blog called MS Behavering if I did not have MS. I enlisted all of my friends and family to help me rename it but they were a sad disappointment, I have to say. Not a funny name in the bunch, but I admit that "lesion" is difficult to pun.
As we are driving, I tell my husband that I think that I have a wrist watch that measures you heart rate, back from the time when I thought I was going to do interval training. Actually, I want to tell him that I have a wrist watch, but I can't get the word out. I can't say wristwatch.
Intrigued, my husband tries to see if he can get me to say the word in another way. He points to his wrist and asks what that is called. I say arm. He asks me "what do you do when with a television?" I say, "you look at it." I can't say the words wrist or watch.
That was the day that I could feel the numbness going all around my entire left side. My ear went numb, my lips, forehead, back of the neck, my whole side. It was weird. Having a numb eyelid is weird. My eye felt sticky. I ended up taking a valium because I was getting anxious and I did not want to have something like a stroke. My husband was already threatening to take me to the emergency room.
So, when I went to Neurologist number two, on Monday I was a bit discouraged. I sat in the office, surrounded by people who were pretty impaired. I supposed that I never really thought about it, but neurologists' offices are filled with people with strokes and traumatic brain injuries and advanced Parkinson's and Altzheimers.
There were a lot of pamphlets on MS, and I thought a little wistfully of the good old days when I thought that I had MS.
When I got weighed, I fell off the scale. Now, that was actually funny and made me feel better, for whatever reason. Neurologist number two, Dr. H, was younger and shorter than I expected. He took the CDs of my MRI and my MRA and left for about 15 minutes, as he could not upload them on the computer in the exam room.
When he came in, I went over the whole story, concluding with what Dr. P said about my cerebral artery and how she did not think that I have MS. At first, he did not seem to really get what I was saying, as he asked questions that I had already answered, but we persevered and seemed to get to the present.
So, I asked him. Did you see the MRA? Did you see the artery and how it is kinked?
Well, he said, I looked and it looked normal to me.
I stop and consider this information.
Did you look at all of the images?
I saw all five.
Did you click on them??
Well, you have to click on them because the images are stacked and you will get different views.
Oh, he said. However, he said that he thought that it was more likely that I had MS, as the lesions were exactly where he would expect them to be if I had MS.
What about lupus? Well, he said, it doesn't look like the test for lupus was done.
Nine vials of blood? No lupus test? Are you sure?
So, he examines me and says that I definitely have expressive aphasia. Which means that I have trouble speaking. I knew that, but it is nice that he can see it. I am having some memory problems, which I also knew.
It is funny, but Dr. H is completely the opposite of Dr. P in terms of his approach. She said that the tests were pretty invasive and wanted to wait and see.
Dr. H says that he is going to pretty much test me for everything. He says that it will be a shame for me to have something that they can fix because they were not aggressive enough in looking for it.
So I will be getting more blood tests, for lupus, for Lyme's disease, and a host of obscure diseases. I am pretty sure that we don't have deer ticks, here, but I am not going to quibble. He wants an MRI of my brain and an MRA of my head and neck. And a chest x-ray.
Oh, and a lumbar puncture.
That's a spinal tap. That is how you know if you really have MS.
He schedules a lumbar puncture for me for the next week. I must have looked funny, because he reassured me, saying that it should be pretty easy. I am .... not obese (gee, thanks), in good health.
I am not reassured. I gave birth to an almost ten pound baby because I was scared of the epidural.
There is something seriously wrong with people sticking needles in your back and drawing out your cerebral-spinal fluid.
Maybe I will use this to sharpen my writing, which is always good.
Surely part of it is to update people who are in the know so that I don't have to talk about what is happening to me medically, because it is a big, gargantuan bore.
If I can borrow from a friend of mine, Shelley, I think it is all about the honesty. Maybe, just maybe, I can be honest about what it feels like to become a sick person, a patient. That is a good goal.
I think that I am blogging this because none of this is what I would expect. I have never thought that I would be sick, ever. Not really. And nothing about it is what I would have thought it to be. I am not what I thought I would be.
I am more scared than I thought I would be.
I am more petulant.
I am not brave.
I am graceless.
It is not that I am not receiving grace, because grace, surely, does abound. I just feel like I am not a beacon of light in all of this. I think I shine better as a well person than as a sick person. And that is a little embarrassing and makes me cringe a little.
One thing that I am not blogging for is for sympathy, because, believe you me, I need none. If I dropped dead tomorrow of some gruesome, painful disease, I would never be able to say that my life is anything but absolutely wonderful. So, please don't say that I am brave or strong, because I am not. I love the fact that some of you can come and contribute, because I truly love your voices.
I give you full permission to laugh at me -- because that is great. But sympathy? None needed.
I am not going to say that there are moments that have been difficult. Watching my poor husband deal with all of this has been no fun. Scaring my kids and making my sisters cry has not been fun. If it was just me, I think that this would be much easier.
However, I am in a lull right now. In between medical tests and medical appointments. I am going to get back and catch up to the present in the narrative.
Actually, if I was going to really be honest, I am blogging this, partly because I am scared that I will forget what this is like. And that whatever I am supposed to be learning will be forgotten. Because my memory is a little shot right now.
Sunday, November 18, 2007
If you were a flavor of ice cream, what would it be?
Okay, so it's not exactly like the Dating Game, but seeing more than one physician is a little like that. It feels a little like being unfaithful. It would be easier if I did not like Dr. P, and I did.
Back when I was looking for a neurologist, any neurologist, I made an appointment with someone at Loma Linda and the appointment is about a week away.
Even though Dr. P and I both discussed the fact that I would see another physician because she was located so far away, I feel a little funny. I called her office and requested that the test results be sent to me, neglecting to mention that I was taking them to another physician – sort of implying that they were just for me, not that I was going to show them to anyone else.
I am not sure why it feels like I am cheating on my physician. I only met with her once. We both knew that it would end, no promises of fidelity were made. She knew I would see someone else – it was just a short-term thing.
I think it is because a relationship is forged when you start seeing a physician – however fleeting. They are important to you – you rely on them. The intake is a little like when you talk about your relationship history on the first date. There is a surprising desire to please. Do they like me? Do they get me? Will they take me seriously? Especially when there is such a weird set of symptoms – will they think that I am sick? Will they dismiss me?
I think that you just want to be important enough for them to pay attention to you.
It feels like dating because you don’t know if they like you as much as you like them. Are they as into you as you are into them. The fact is that it is a kind of one way relationship – there are more of us than there are of them … despite the fact that we pay their salary.
A week after my blood draw, I got the news from Dr. P. All of the tests were normal, but she said that the marker for lupus was raised, slightly. It was out of the normal range, but not a lot -- based on that number alone, she was hesitant to diagnose me with lupus. She said it could be almost anything -- atypical MS, a brain infection, a different connective tissue disease ...
We had a nice chat about what I was supposed to do from here, and she basically said that I should not worry. I could taper off the valium over the next two weeks, if I wanted to. I confessed that I had not taken it at all. She laughed, but said that if I had taken it, I would not have been so anxious over the week. (I had called her office more than once, but the lab people had not sent the results and they needed to be asked to fax them over.) I told her that even if I did take the medicine, my mind would be anxious, even if my body was relaxed.
She gave me her cell-phone number and said I could call her at any time and to call immediately if I had any symptoms of lupus and she would start treatment right away. I told her thank you very much. She gave me the name of a physician in my area to call, saying that they had talked over lunch and that he would see me on an emergent basis, especially as I was a nice patient.
Oh! I said. Thanks!
She laughed and said that, although I was a nice person, what she meant was that I was a nice patient. Which is different. She meant that I was diagnosable. That I could be treated successfully.
Although only people who actually know me are reading this *waves* -- in case someone, somewhere ever does read this who does not know me, I work in a mental hospital.
One of my newer patients and I were talking the other day. He is relatively young, bright, articulate, a little manic (in the bipolar sense). We were talking about his behavior on the unit and he was saying that he was trying to be a good patient. In some ways, this is a good idea. A good patient is one that causes the staff no problems -- no demands, no headaches and basically takes any crap that is shoveled out to them.
But part of me really hates it that being invisible is considered to be a good thing -- that it is seen as progress to be passive and keep one's head down. So we discussed it, seeing the reality of the situation but also talking about whether that was a legitimate goal. So when I was deemed a nice patient, the reality of my situation hit me, yet again. If I have some chronic disease, I will be a patient.
Being a patient requires that you take on a certain set of characteristics -- being told what to do and following instructions. I am not really good at this. At all. I don't know how to be a good patient. I wonder how I am going to do at being a patient if I have a long-term condition.
Saturday, November 17, 2007
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".
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.
Thursday, November 15, 2007
Being befuddled, I missed the turn-off and ended up driving the loooong way to the neurologist's office. I got there, and went in, shaking a little, leaning on the elevator wall ... partly because standing up straight was not feasible, and partly to gain my composure. My sister, Mel, had been talking to me in the parking lot, giving me a last minute pep talk, giving me the psychological equivalent of twitching my collar straight and smoothing my lapel, looking me over with a critical eye.
The office was empty, but there were a LOT of pamphlets, mostly on MS. I got to read an article by some comedian who has MS. I learned that Teri Garr has MS. Which I think I knew already. I felt a little like it might not be so bad to have MS, especially if it was the remitting kind, where you have symptoms and then they go away. Maybe I could live with that.
My goal was to get prednisone, even if I did not have MS. I had been reading on the Internetz that early treatment was so important that some physicians thought you should get treatment even before you got a diagnosis. I was having the distinct sensation that I was having my neurons demyelinating, with sad little wails and ineffective, disruptive fizzing. They were unable to talk to each other any more and chaos was reigning.
I kept squinching my eyes shut, one after another, to see if my vision was still blurred.
It still was. Optic neuritis ... it had an ominous, final tone to it. Yeesh. I like my optic nerve. I wanted it to be happy and functioning. And optic neuritis is supposed to be painful. I am not very brave ... pain and decline in function? Not bloody likely. I am not signing on for that. Nuh uh. Nope ... no way, Jose.
And my left arm was going numb along with my left leg.
I remembered sitting in the oncologist's office with my sister, Cynthia, when she was going through her tests for cancer. People always say that it is harder to watch someone go through something frightening like this -- that it is easier to be the victim. I don't know if that is true anymore. As a family member, I had a task -- I was charged with a sense of protectiveness and advocacy. I would have knocked down the oncologist if my sister had said it would make her feel better.
Being the patient just feels ... pathetic. And like you are a supplicant. And a wanker.
Finally, I got called into the office and I thank the neurologist for seeing me on such short notice. I discuss my weird symptoms and at first, she is looking at me as if I am a bit of a lunatic and exaggerating what seem to be relatively mild symptoms. I mean, she sees people with traumatic brain injury and stroke. I am just having some mild word-finding difficulties. However, the fact that I have a Ph.D. and not one, not two, but three master's degrees, convinces her that my decline, although relatively small, is a substantial change for me, and she does a good, thorough neurological exam. I am hyper-reflexive and uncoordinated. She has me walk a straight line and I can't. She has me close my eyes and walk a straight line, and I get lost. Literally. I took two to three steps and could not figure out where I was -- I was completely disoriented.
The neurologist, Dr. P, begins to talk about the MRI and I asked her if she could walk me through it, because I wanted to see what she meant. When the be-speckled images come up, her statements kind of knocked me for a loop -- she said that she did not think it was MS and if it was MS it was atypical. The MRI did show lesions, but they looked old to her and were "not where MS lives". In addition, they might just be signs of aging, but that the lesions looked like what she would expect to see in a 65-year old woman. But, I protested, I am not 65! She blithely ignored the sounds I was making, equal parts protest and affront.
Bewildered, I asked her what else would be causing the symptoms, and she said that it might be connective tissue disease -- something vascular -- like a dissecting artery.
Waaaaaitaminute! Dissecting? Artery? I felt woozy. She explained that in some auto-immune diseases, the connective tissue in the artery separates. What kind of connective tissue diseases, I ask feebly, trying to sound interested rather than panic-struck. Lupus, she says.
As little as I know about MS, I know less about lupus. I think that a character on One Life to Live died from it in the '90"s. After thinking about it for a moment, I ask her which she would rather have, MS or lupus. She clearly does not want to answer the question, but admits that she would rather have MS, because you regain function. The treatment is much tougher for lupus ... low doses of prednisone for a couple of days for MS, massive doses of prednisone for weeks for lupus.
Prednisone is what made Jerry Lewis blow up like a blimp. I will look like a puffer-fish. I have an image of myself, drifting along like a Macy's parade balloon, bobbing gently along, hands swollen like Micky Mouse, face as round as a pie plate.
On the laundry list of lab tests, there is a specific test for lupus. Dr. P is not going to be my primary neurologist, because she says that I will need a lot of treatment in the beginning, but that she is getting the ball rolling so that the neurologist that I will be seeing will have the preliminary stuff done. I tell her the name of the neurologist at Loma Linda that I will be seeing and she thinks him a good choice.
In addition for blood tests for lupus, Dr. P says that I need to go get an MRA (which is like an MRI, but for arteries). Ordinarily, if it was thought that I had MS, I would get a lumbar puncture -- otherwise known as a spinal tap. But she does not think that I have MS, so she is going to hold off on it. It is no good unless you are in the middle of an active MS episode, anyway.
I am not sad at missing out on a spinal tap.
I rush over to the imaging place and, as I drive, I notice that the left side of my face is getting numb. I feel my cheek with my fingertips and it feels funny -- puffy -- like when you get novocaine at the dentist. I went to the wrong place and by the time that I get to where I am supposed to be going, the radiologist is just about to leave for the day. I ask if they would just wait five minutes more so I can get this done tonight. The radiologist kindly agrees and I am fed into a tube and heavy metals are injected into the arteries in my neck.
It is not as bad as the MRI, and it is an interesting sensation when the metal flood my head. I can smell the metal and taste it. My tongue is a bit hot. It is a little disconcerting as the heat floods my face and head. I can feel the blood thrumming under my skin, full of speckles of metal. I almost fall when I get up. I can't think of anything funny to say.
The radiologist is very kind and sympathetic and says that he will get the results to the neurologist first thing in the morning. I must have looked a bit done in, because he patted me on the arm when I left and told me that he would rush it. I thanked him. I called my husband and told him what was going on, and he sounded a bit lost. His usual question is something like "but what does that mean?" I called my sister, who was appropriately horrified for me.
Sometimes you want someone to be horrified for you. I told her not to tell me anything about lupus, because I did not want to know. I could hear her typing into the google search box.
So, I drove the hour and a half home. I did not want to have lupus even more than I didn't want to have MS.
Is it too late to ask for MS?
Wednesday, November 14, 2007
Now, I love my physician. He draws little pictures to illustrate concepts for me and will spend as much time as he needs with me. Last time I saw him, back in March, before all this started, I told him that I was feeling exhausted and dizzy. He said I worked too hard (which I do) and that my blood pressure was probably too low (which it is). But it might also be that those were the early manifestations of what is going on with me now.
But, getting an appointment at the office was difficult, but the nurse took pity on me and made an appointment for me with one of other physicians in the practice, swayed by the wobble in my voice, most likely. So, another two weeks into it, I got an appointment with someone who I had never seen.
MRI in hand, I presented my laundry list of weird neurological symptoms, feeling like a chump. After a quick exam (I was so dizzy that when he told me to put out my tongue, I gagged)), he wrote an order for a stat neurological consult. He also told me that I might be having migraines and maybe it was just stress. He told me to take a baby aspirin a day. Why, I wasn't sure.
I just looked at him.
It is not migraines and I am not just under stress. I have been under more stress and never felt this. If it was migraines, would I have lesions in my brain? Wouldn't I have a headache?
By the next week at work, I could barely walk a straight line. I noticed that my vision in my right eye was blurring periodically. I looked up the symptoms of MS on the Internet and found that a common, but serious symptom was blurred vision, and that was one that you should get treatment for right away. I did not like the other symptoms, but the blurred vision freaked me out more than a little, I would say.
I started dropping things that I was holding in my left hand. I dropped my lovely (expensive) mineral powder and it exploded all over the bathroom. I looked at my husband, as if it was his fault and said, "I'm not cleaning that up." I dropped a full cup of coffee. I would think that I was holding something and it would just fall to the floor.
I started to feel like I was getting a new weird symptom per day.
I finally told the psychiatrist on my unit, because I needed a suggestion for a good neurologist. I hesitated to tell him, because we have been good friends for the last six years and I knew he would worry. Which he did. But he went to the consultant at the hospital and found someone that he thought was the best neurologist around. So I called and made an appointment with him.
Three weeks in the future.
My daughter kept looking at me woefully, looking like a Precious Moments figure. She would ask me if I was okay and I would say, "Yes, I'm fine!"
This, but sad. I finally told her to knock it off, because she was depressing me. I would let her know if I was dying and that she should clean up the cat barf if she really wanted to help me out.
Back to the whole physician thing. The next week, I finally spoke to the other psychiatrist on my team. It was a Wednesday morning and I was so off balance that I could not walk down the hall at work. I would have to stop once or twice on a trip and bend over, trying to keep from throwing up. I could not stand up straight. Speaking was really difficult. When I did speak, the wrong words came out. I lost my car keys that morning and my husband found them, right next to the computer.
I felt like crap, to be honest. I noticed that my left leg was going numb -- it felt heavy and I was stumbling. I had told my sister that I did not need a cane, and I was starting to think that I had been premature.
Of all of the things that were happening to me, the hardest thing for me to handle was that my thinking had slowed down. It was like trying to think through molasses. It was an effort. I may not be the smartest person around, but my mind is quick. It was no longer quick. It stuttered and staggered and swayed around. I had to grope for thoughts.
So, on that Wednesday morning, I felt like crap. I had groups to run and individual sessions to do, and I felt like crying. I was worried because I couldn't see clearly out of one eye. So, I went up to Dr. G (psychiatrist number two) and said, in a casual way, "So, do you have a neurologist who is a close, personal friend?" He said that yes, in fact he did. The upshot of that conversation was that his neurologist friend would see me that afternoon. It was more than an hour drive away, but I gladly took it. Armed with my lab tests and the CD of my MRI images, my leg numb, dizzy and inarticulate, off I went to see a real neurologist.
Thursday, November 8, 2007
I asked one of the psychiatrists on the unit next to mine if he knew of anyone who specialized in MS. He and I get along well, and we have had lots of conversations about interesting topics in medicine. He did not know of anyone off the top of his head, but he would look into it. At the end of the conversation, he asked who the referral was for. I told him that it was for me. I saw the look on his face change, as he shifted from "interested professional" to concerned about me, and I realized that this is where I will be going for some time to come.
I will have to fend off concern, without looking dismissive. I will have to say that I am fine, when I don't really feel fine. I will have to reassure people that it is no big deal, when it feels like a really big deal. I will have to keep myself from babbling about my health, because it is all consuming.
I don't want to tell anyone.
But I want to tell everyone.
I knew that I had to tell my supervisor, because I might have to take time off for medical appointments. I was going to tell my friend Kim, who is the social worker on my unit, because I knew that she would pray for me. I did not want to tell anyone else, because I felt like a fraud. I knew that something was wrong with me, but I did not have a diagnosis, and so telling people about it seemed wrong. What if it was all a mistake? I would be the recipient of false sympathy! Ack!
So I went to work, distracted and anxious. I did not feel like myself at all.
When I went home, I looked at the Internet, feeling like I was looking at a map. That this was a trip that I would be taking. I found myself saying to myself, "I have MS", trying it on for size.
"I am going to be disabled."
"I am going to be decrepit."
"I am going to be damaged."
"I am going to be different."
I felt broken.
It felt wrong.
I am going to have a chronic condition. I may not be able to work. I may have to undergo medical procedures. I am going to be a patient. I am going to be sick. I will have to take medicine. I will have to rest. I will have to take it easy. I will have good days and bad days and on a bad day, I will not be able to do what I want.
I think I am stunned by the whole idea.
I was going to be one of those old ladies that acts younger than her age. I was going to dress twenty years too young and walk with a free stride. I was going to have all of my teeth and drive like a maniac and travel the world.
My sister and I have plans to be romance writers and have a house with a dozen cats and at least one handsome pool boy.
None of my plans for myself included brain damage or illness.
Tonight my mother-in-law asked me about a slew of unpleasant tests that I am taking on Monday (more about that later -- sorry that this is out of order). I was telling her that the thought of a lumbar puncture was creeping me out. She said, in a comforting way, that maybe my brother in law was right -- "maybe it's nothing".
Just so you know, I also wonder if maybe all of the symptoms that I am experiencing are nothing. Which makes me batshit crazy. Or have such a weird disease that people think that I have nothing, while I am being slowly devoured by parasites or something. Or be the biggest effing hypochondriac that the world has ever seen.
I sort of would like this all to be nothing. Really. I would like all of my symptoms to go away and my brain to be fine. I would like to not have anything chronically wrong with me. I would like it if the radiologists and neurologists who looked at my MRI were all incompetent idiots and are all wrong. I would like it to be a brain infection that has miraculously cleared up, or an inner ear problem or something.
I am totally up for a miracle, here.
So maybe this is all nothing. But it sure feels like something.
Wednesday, November 7, 2007
I love neuropsych. The brain is really fascinating.
"There are perhaps about one hundred billion neurons, or nerve cells, in the brain, and in a single human brain the number of possible inter-connections between these cells is greater than the number of atoms in the universe."
I remember the first time I was teaching Biological Psychology and had to draw a neuron. It looked like a pre-schooler's version of a nerve cell. My sister Mel said to draw it biiiiiggg, so I started at one end of the white board and drew it larger than life. That was fun. And she made me say "terminal bouton" not "terminal button", so I would sound more like a medical student and less like a psychologist.
I like this image, too.
Multiple Sclerosis is an auto-immune disease wherein the myelin sheath (the little red thingies) ... um ... demyelinates. That means that communication is disrupted, because the job of a neuron is to talk to other cells.
Myelin speeds the nerve impulse along. It does not conduct electricity (which is what a nerve impulse is made of) and the message jumps along the axon of the neuron, from little spaces between the myelin, thereby saving time and going faster.
When I was teaching Intro Psych when I would teach about this, I would make the whole class act it out. I made the nerve impulse (the action potential) dress up in a cape and mask (because Action Potential sounds like a super-hero name to me) and had them run up and down a row of other students, acting as other neurons. When acting the part of a myelinated neuron, I made the Action Potential run real fast and leap has they ran down the aisle. It was pretty fun -- getting a bunch of University students outside, acting silly. But to this day, I will meet students who remember how a neuron works.
Myelin is made of up mostly fat and I CANNOT BELIEVE that my brain is losing fat, when the rest of my body is intent on packing it on. If I even have MS, which has not yet been confirmed....
I kind of didn't.
It took about a week to start looking, I think.
What I did do was go to work the next day (after what, three hours of sleep?). Unusually for me, I did not run off to the Internetz to read everything I could on MS. I just went to work, and saw a ton of patients. I was a little distracted, but being able to compartmentalize has its bright side.
Before I left for work, I gave my husband a brief, dismissive discussion of my early morning adventure. He seemed taken aback, but accepted my assertion that everything was fine, just fine.
I did not want to talk about it.
The next day, I did a bunch of errands and grocery shopped and called my sister, Mel. I told her, in a "guess-what-I-did-last night" sort of way about my trip to the ER. She asked, "what does that MEAN?!" which is why I love her. We talked for a bit and she called me back later when I was at the AM/PM, filling my car with gasoline. She said that she had burst into tears in the parking lot and thanked me for that embarrassing moment. I told her that she was welcome. She felt better now, because she had read about MS, and found that most people have a mild, remitting case, with flareups and remissions. I told her that was great and thanked her for starting to look into it for me, because I was not able to do so yet.
I should tell you something about me. When I am stressed about something, I read about it. When I had my first child, I literally brought home stacks of books. I read about the Bradley Method, the Lamaze Method and that one where you dim the lights in the delivery room and put the baby in a pan of water after birth.
My way of dealing with almost anything is by reading about it. I am a researcher at heart.
I had no interest at all in finding out about MS, but once my sister had told me something about it, I started looking on the Internet. As we all know, the Internet is a blessing and a curse. I read up about the symptoms, and the only thing I seemed to have was the less-common one of speech difficulties. I was happy to not have the incontinence and difficulty swallowing set of symptoms. Yeesh. Ack.
However, reading about the disorder gave me some impetus to see a neurologist, because now I could actually feel my neurons demylenating. Even if I did not have the disorder.
I began calling around to neurologists and found out that there is no such thing as an emergency appointment. I emailed a friend of mine who has MS and got her recommendations. She gave me three to call. They had no appointments until, like November. One guy had no appointments until January. I looked on the Internet for someone who specializes in MS at Loma Linda, which is the hospital that I go to, and found one specialist. I called and he had no appointments until November, so I made the appointment. I did not get to see the person that was the specialist, but I got an appointment with one of his partners.
So, the two to three day follow-up turned into about a month. Not exactly timely, I would say.
Monday, November 5, 2007
I am also forgetting things, which is not like me.
So, why am I writing this? Partly because it is interesting to see things from the inside, for a change. I am a psychologist, and I spend a lot of time talking to people with problems.
I don't really have problems, myself. Not real ones. I mean, my car is a mess, and my house is a disaster, and I don't talk to my brother, but problems? I don't really have them. My life is tremendous -- filled to overflowing with blessings and abundance.
I have a loving, smart, kind, funny, and tolerant husband. He likes me. We have been married for almost twenty years. I feel bad for him.
My kids are all amazing (as my five year old comes to breathe his minty-fresh breath in my face to give credence to the assertion that he brushed his teeth -- a nightly ritual -- and asks if we can snuggle while we wait for his dad to get home from teaching). They are all terrific. Healthy, happy, reasonably well-adjusted -- works in progress but sound. I wonder how three such individual beings can have all come into the world. I don't want their mom to be sick.
I have great sisters -- loving and funny and supportive. I would be best friends with my sisters, because I just like them so much. I have good friends, both close and far away. My work is interesting, challenging, and absorbing. I don't want the people that love me to have to deal with this. I don't want my patients to be impacted by the demands of my medical appointments. I don't want to have to explain why I didn't get something done or didn't get it done right.
I love my job.
I love my family.
I love my life.
My life is a bit too hectic, but I have always seen this as a temporary measure -- an ant summer, preparing for a grasshopper winter. These are the days to work hard and prepare for the time of rest.
(remind me to tell why I am blogging this, because I will forget)
So -- all that to say that I have a remarkable life and now there is something wrong with me.
I thought I would blog about it, because I like to write. And because I have never seen the process of becoming a patient. I am the doctor -- I am not the patient, and observing the process appeals to me. Sort of a role reversal ... seeing how one becomes part of the medical machine.
I am almost never sick. I have had three kids and breezed through the pregnancies. The most interesting thing that has happened to me physically was when I had gestational diabetes with my youngest. However, that soon became common-place. I distinctly remember sitting on on the edge of the bathtub, hands shaking, sweating and scared, trying to inject myself with insulin. I kept telling myself that thousands of people did this and to just suck it up. I managed to do the injection and became so proficient that I remember driving down the freeway, injecting myself. Not that I recommend that, but it became no big deal.
So that is one reason that I wanted to blog this process. Another reason that I want to blog this is because it is a blog-worthy topic. People blog about all kinds of things, their travels, their favorite foods, mustaches, shoelaces, their weight loss.
And I want to remember what this process is like.
And I want to see how I get through this.
So far, I am not impressing myself very much. I feel like I should be rising above this in some way, but I don't know what that means. I don't think I am coping with this very well -- not really.
I did not want to incorporate this topic into my other blog, because it does not fit. (and you should really go over to Stravaigin Aboot to see that blog, which is very nice, if I do say so myself).
So those are some of the reasons that I am blogging about this. It has been six weeks or so since my first trip to the emergency room on September 27, 2007. They still don't know what is wrong with me, but I definitely have something wrong with my brain.
Anyone got any ideas?
... Like I don't have enough holes in my head already
That sounds kinda funny -- but suffice it to say that I made a friend on the Internetz, and went to visit her in lovely Scotland, and decided to blog about it, rather than sending innumerable emails filled with pictures that people would have to download and then clutter up their hard drives. It was great fun, and it was also great to have people that I love comment on our travels. A good time was had by all.
It has been about a year (almost exactly) since that wonderful trip and I have had the usual life events -- family, work, rushing around like a maniac. About four months ago, I started stumbling every so often, and I was having some, what we in the business, call "mild word finding difficulties." I have written that about a thousand times, most likely over the years. It means that I fumble for words, as we all do from time to time, but mine were getting a little worse. And I was having dizzy spells -- mild ones, but nothing to get excited about.
(remind me to tell you about why I am blogging about this ... because I will prolly forget)
But, I would have to say that this all started at the end of September, in reality. As I said, I have been having problems with word finding. It is a weird sensation, because I can see a picture of the thing that I want to say, but I can't get it out. For example, there is a pink plastic envelope in my back seat and I want to ask my son to hand it to me. I say "Hand me the .... the .... um .... the .... (Aaargh! Crap!) ... the ... (waving my hand at the back seat) ... um ... Envelope! Envelope! The pink one!"
So I have been having mild word finding difficulties for a couple of years. I have to pause sometimes and wait for my brain to scrabble around and get the proper word. Sometimes when I want to say "table", it comes out "chair". When I want to say "month", it comes out "week". Hilarity ensues. My daughter said maybe I have a brain cyst.
But about six weeks ago, I found that I was having increased difficulty speaking. It would be like my train of thought would be chugging along merrily and then a word would jump off the track and all of the little words would derail too and I would have to re-order them and begin speaking again. I also was reading something that I have read literally hundreds of times and lost my place and could not find it. And I was stammering.
I wondered if I was having a stroke, but I didn't have a headache and no weakness, but there was definitely something wrong with me. So I called my physician and asked for an appointment. Along the way, I talked to a nurse, because I wanted to know when I should start to worry.
I probably took it more seriously than I would have because my husband's cousin had just had an Arterio-Venous Malformation rupture and was in a coma. That was a little scary and I thought that I would be really mad at myself if it turned out that there was something really wrong and I had not had it looked at. So I sat on hold for twenty minutes to talk to a nurse and ended up asking in an apologetic sort of way what I should look for if there was something that actually needed attention.
The nurse told me to go the emergency room.
Which was not really what I was expecting.
So, after I finished work on a Thursday evening in late September, I went to the emergency room. What a great experience this is! There are like a million people in there -- I would have gone to the Urgent Care, but I was told that they would not have the equipment for the test that I would need and I would be sent to an ER anyway. So, here I am, sitting in the sub-zero temperatures, shivering and reading my book. I have just started it, so I am feeling okay.
After an hour and a half has passed, and I have not been triaged. So I go back up to the front and say that if I am having a stroke that I believe that quick treatment will prevent further brain damage.
The nurse says that I will be next. I go back to my seat and wait, wondering if I really am having a cerebral hemorrhage. A young man comes in and sits next to me. He says that he is having a panic attack and that he hopes that he can get his medication refilled. He says that he is staying in a 20,000 dollar a month condo and that the limo has just driven away. I tell him that panic attacks are not fatal. I do not say this in a mean way, but in a matter of fact way, because they really are not fatal. You feel like you are going to die, but generally you don't. I am probably not very sympathetic, because I think that he is both psychotic and drug-seeking. He presents an impressive litany of drugs that he has been on -- mostly benzodiazepines. He looks like he is on speed ... He looks taken aback by my matter-of-fact assertion that he is not going to die from anxiety.
I get triaged and when the nurse asks my weight, she has me thirty pounds lighter than I am, but I can't get the proper weight out. I almost burst into tears, because now it feels more real. I can see the numbers in my head, but they don't come out.
I go back out and wait for another half an hour. I go in and wait a few minutes for the ER doc. She comes in, slightly built, with blond hair in a messy bun. She looks pale and tired and I feel stupid. I tell her about my symptoms. I tell her that I am exhausted. I tell her that I can't talk. She says that I should have a CT scan and has me put on a hospital gown. I tell her that I think that I will just go home and have my physician see me. She says, "better safe than sorry" and she is right, but I am feeling exposed and stupid and like a big hypochondriac. Honestly, so what? Word finding difficulties? ...
I get an IV -- for just in case. Just in case of what?! That gives me the serious heebie-jeebies. I get another blanket, because I am cold. I finally crawl out of the bed and call my husband to tell him what is going on. I tell him to stay with the kids and I will be fine.
Anyway some hours later (and half-way through my book) I get wheeled down the hall to get the CT scan. The machine looks like it was made by RubberMaid. Or Fisher-Price. It is big and made of molded plastic. It is called something like a GE Zapp-O-Matic. The test is not too bad. I wonder if it is like an Exer-Saucer for adults. There should be such a thing ...
I get wheeled back into my room and give my husband another call. I wonder how selfish it would be to tell him I am almost done with my book and can he bring another. I decide that will be a bit much, and lie and say I am just fine.
Another couple of hours later, the test results come back. I don't have any tumors or stroke. Whoo hoo! But the physician says that she wants me to have an MRI, just to be safe. I say, are we sure? and she says that she thinks it best. So I wait for another hour or so and almost finish my book. I am getting a little worried, because I only have another couple of chapters left. I again debate about whether I should have my husband come out and freeze with me. I decide no.
And I am thirsty and hungry.
The man in the next bed over has had a heart attack and I listen with half an ear to the goings on. At eleven pm, I go in for the MRI.
I have to say that it is pretty scary. This machine is much more high tech looking. It kind of looks like part of a submarine. They put a cage over your face and headphones on you. I am offered drugs and I decline. When the headphones are put on me, I ask if it is so I can listen to something or to protect my hearing, and the tech says, "both". He tells me 17 minutes and I get fed into the tube. I began to count.
It is loud, which I wasn't expecting. You can feel the magnetic field moving over your skin, causing little whishes and ripples. It is almost a physical touch. The machine clatters and I almost jump out of my skin. They are piping in some classical/soft hits music and I am grateful for "Memories" which is a long song. Other than that, I am forced to listen to Frank Sinatra, which I do not enjoy nearly as much.
46, 47, 48, 49, 50 ....
Whew! I am slowly moved out. The tech says that he is going to inject something into me to provide contrast. I ask if we have to, and he says that it is a good idea to do so, as long as we are here. I grudgingly agree, but am not at all happy about the re-entry into the magnetic tube. I begin to count again, feeling little spurts of anxiety that I am trying to relax through.
Finally, it is over. I go back to the waiting room and finish my book. I doze off for a little bit. I get moved over to a much busier part of the ER. There is a man screaming "help me! help me!" He sounds a bit crazy. I finally ask a nurse if anyone has checked on him and she thanks me for my concern and says that he has been looked at.
I am done reading, and I am bored and tired. I watch the goings on through my open door. People bustle past, carefully not making eye-contact. I guess that they are trying to make sure that no one asks them a question. It is a fairly cheerless place, I would have to say. We are in better spirits at the mental hospital that I work at. We are waiting for the radiologist to send back the report. I am a bit angry at my husband for not being there, even though I assured him that he should stay home.
It is coming up on two in the morning and I want to go home. I ask if someone will please take out my IV so I can leave. They can call me with the test results. I have to go to work in the morning. They say no, they won't take out the IV. I examine it, because in about a minute or two more, I am taking the damned thing out.
I see my physician come in the room and watch her in the nurses station. She finally comes in and says that, although the CT scan is normal, the MRI shows some abnormalities. It shows that I have several scattered lesions in the white matter in my brain. I know vaguely what this means, because I am a psychologist for crying in the sink. She says that it is not definitive, but it appears that I most likely have multiple sclerosis. She says that it is very important that I see a neurologist in the next two to three days. I say okay.
I don't know what to think. My first thought is, "thank heavens I don't have a stroke or tumor or cancer or something." The second thought is ... can I go home now? I ask for a copy of the radiology report.
A half an hour later, I finally get out and can leave. It is almost three in the morning. I come into the house, and my husband, who has fallen asleep, hunched over his cell phone, jerks awake. I n a clipped tone, I say that I am fine, but I might have MS and I don't want to talk about it and fall into bed.