Queen Mediocretia of Suburbia

In Which I Am A Magnet

Things I have attracted today:

Presidential candidates. Well one, anyway. Barack Obama ('Rack, I call him) was at Big Barnes the same time I was this morning. Barnes Hospital is now endorsed by two in seven Presidential candidates, and mysteriously I was there on both occasions. This means I spend way too much time at Barnes.

Smiles. If you are having a big day of tests for a clinical trial, it makes people smile when you wear this:

Tests. Urine, blood, blood on ice (why, I asked, and she said "PK" as if I knew what that meant), EKG, pegs in holes, memory/math test, vision, pulmonary function, disability level, and MRI. I'm pretty sure everything is good except for maybe the MRI.

Vehicles. I was trying to recover the sense I had last night when I got all teary because of the contribution I'm making to science. I had backed out of my parking space ($7.50), and before I stepped on the gas I was plowed into by someone in a Saturn. My Mini Cooper has an unsightly dent in the passenger door. 

Husband of the driver popped out of the car and asked nicely if we could just settle this without involving the insurance companies. I have been through that before with the uninsured woman in Grubville, MO. My sense is that the wife who was driving wasn't insured. 

So here I was starting to feel all Spartacus and these people want me to do them a favor in return for hitting my car. Mmph. I think not. Spartacus has to draw the line somewhere.

Stress Kills

One question neurologists ask when you come in to report an exacerbation is, "Have you had any stressful events recently?"  I used to think, "Who wants to know? Not your business."  Twenty years ago I would have been the first to roll my eyes at the thought that stress could influence your immune system. But then they took rats and stressed them out and it really happens; stress affects your immune system.

Brief immune system lesson: we all have two parts of our immune system: a)kill the bacteria cells vs b)chill out, stop the killing cells. These are supposed to be in balance. Stress gets them out of balance.

When MSers have an episode they have more kill cells than chill out cells.  Therefore, the kill cells run rampant and attack perfectly good body parts. Thats why we inject the chill cells, so even if our bodies crank out more kill cells, we're covered, the new chill cells will convince them to stop attacking. Oh, and the chill cells? They're what make you feel sick and feverish. Picture paying $1K a month for this. Of course, I'm off those drugs now, and I'm taking the experimental FTY 720 drug that stifles the extra kill cells.

(When many normal people get stressed they have more chill out cells than kill cells. The chill cells make you feel sick. Stressed out "normals" may have only one bacteria in their entire body, but they feel sick and feverish.) 

When I changed jobs a month or two ago, I of course considered how this stressful event would affect my MS. I figured it would hit after a month or so. A month or so later, Mom was in the hospital, then Mom was in hospice, and it wasn't so much on my mind. But the last few days, yes, I have been waking up and routinely checking all my limbs.

Then, I guess it was Thursday night, I lay down in bed and could barely move. "Wow," I thought, "This is MS fatigue. I feel totally wiped out."

Then the next morning, as I awakened and did my full-body assessment, I felt a weird sensation in my throat. Tingly, like a paresthesia (an odd MS sensation). I tried to swallow. Ouch.

I lay there for a moment until it struck me that I had a sore throat.

And the fatigue? I believe you normals call it "coming down with a cold."

So, here I am with a cold. A raging cold resulting from my recent stress. Nothing wrong with me except a cough and sore throat. Try and convince me I'm on the placebo now.

If I Had Typed This It Would Be As Full of Errors As a Phishing E-Mail

I have MS and you don't nyah! nyah! nyah! The benefits? Well, free FTY720, and all the male doctor attention, and best of all free publicity! I have been getting all kinds of visitors from these MS blogs that have participated in the MS Link Love Campaign. And to them I say, "Hi! I talk about my vibrator collection more often than I talk about MS."

But, here's the original post, which I have dutifully copied. The list of links is below the jump, with only a few editorial comments from me.

-------------------------------------------------------------------------------

Original post by (I think) Lisa Emrich:

Remember how I mentioned a group project was in the works? Well here it is. As the founder of the Carnival of MS Bloggers, I'd like your help in spreading the word, and in doing so we will strengthen the bonds of our own little Multiple Sclerosis Blogging Web (and share some linkie love with each other). If you are not an MS Blogger, but are a regular reader here, please feel free to help spread the word too.

Here's what you do:

1. Copy the entirety of this post
2. Create a new post and paste this content
3. Visit 3 of the blogs listed below which you were unfamiliar
4. Leave a comment on their blog encouraging them to participate
5. Please add Brass and Ivory to your sidebar, if it's not already

New editions of the Carnival of MS Bloggers will be presented bi-weekly at Brass and Ivory. Previous editions will be are archived here and the button below has been revised to include the new link. Please update your sidebar.

Like I said, the list of links is below the jump, with only a few editorial comments from me.

She Looks Great!

Back in '94, five days after my elective insurance started (victorious smug snort of self-satisfaction) I woke up and my feet were asleep. Oh, and I felt like my guts were super-glued together.

"Like a tight band is around your torso?" asked the neurologist I saw seven days after the insurance started.

"Why, yes, it feels just like that!" (Torso band. Classic. Textbook. So unimaginative.)

This all happened in less than a week. I went on a cruise, returned to an MRI and I was back on the medical Fast Track. The secret to the fast track? Have something so obvious even the receptionist can diagnose it.

"Hmm," grunted the neurologist, "I think you might have a mild case of MS."

"Hunh." I grunted in return, as these thoughts went through my head, in this order.

1. No, I don't. You are wrong. (Stage 1: Denial.)

2. Shit. The second question that gastroenterologist asked me was "Do you have MS?"  Shit! (Stage 2: Anger!)

3. But he said it's a mild case. (Stage 3: Bargaining?) 

4. Crap. I bet everybody starts off with a mild case. Then they DIE. (Stage 4: Depression ... )

5. Okay. What do I know about MS? (Stage 5: Acceptance.) Well, when I was in college  there was that evil character on Days of Our Lives. She was in a hospital bed and Stephano DiMera came by and complimented her on conning the doctors into thinking she was sick (for some evil DiMera scheme) and the MS thing she threw in there, that was a nice touch. No, she sobbed, they found out I really do have MS, and I could get amnesia, or go blind, or be paralyzed! (Or, evil DiMera lady, you could poop uncontrollably for a year. Classy.)

I bring this up because today I had the tv on today and I surfed past Days of Our Lives, and there she was. "Dang," I thought, "She looks good." So I did a little research, and it looks as if after a 20 year absence "Anna DiMera" is back.

Here's the cool thing: "Anna" has a MySpace page. She can be your "Friend"! You can wish her a happy birthday! Even though she isn't real!

Click here to see her MySpace page. Personally, I think she should have more sophisticated taste in music and color.

The best part appears at the beginning of her bio and is the only reference to MS:

"Roman believed Anna was dead, but she told him she was rescued and then sold into white slavery. Anna had red marks on her back which she claimed where whip marks, but were actually scars from multiple sclerosis, which she kept a secret."

Yeah! Because white slavery, society accepts that. Not like the DREAD Multiple Sclerosis Back Scars. Which are entirely fictional. I Thank God I didn't asks the neurologist, "but...but...will I have Back Scars?"

Side Effects

Well, Monday morning is the next time I meet with the clinical trial people. I've written out all my "side effects" from the "placebo," and with the exception of the one I have hinted at in the vaguest terms here, I don't have much to offer. I'm sure I can contribute weight gain to the list, but every day when I write out any adverse events I want so much to throw in:

Sudden Blindness
Spontaneous Understanding of Portuguese
Hallucination (Giant Sheep)
Husband Reports I Smell after Dinner
Gambling Addiction (this is a real side-effect of an RLS drug)

Any others?

The Cure

I heard that a speaker at a medical school orientation once said, "Are you here to cure cancer? Stop looking for a cure. Look for better treatments, not a cure, because you will almost never cure anyone of anything in your entire medical career."

Well, I have been cured. I have not felt well of late. Light headed, woozy, like the late stages of grain poisoning, call it what you will. Then suddenly, the miraculous cure.

I slept on my left side.

Everyone, no matter what ails you, I implore you to sleep on your left side. Since I don't really know has been wrong with me since ... oh .... January 2, there may be only a strong psychological advantage to sleeping on your left. I've been told it's good for pregnancy and high blood pressure. I think we need to try out its placebo effect to see if perhaps it will cure everything. Seriously, can you think of any disease that can be cured?

That's what's so intriguing about stem cells - if they grow you a whole new immune system, do you still have an autoimmune disorder?  If you get a new spine, and you are no longer paralyzed, I suppose you are cured. What would that mean if there was a universal cure of stem cells followed by sleeping on your left side? I suppose Steve and his guide dog would slow down. I wouldn't be married to Gary anymore, because I'd have killed him. He doesn't suspect, but I know the jury would put me away for sure if I killed my "epileptic" husband. If he were cured of epilepsy, I might be tempted.

Of course, this isn't my problem; I'm looking for treatments, not cures. Of course, you know who else has MS. That would be Mrs. Mitt Romney. Who knows how this will influence Mitt to vote on stem cells. Sure it might cure his wife, but then, there's always a down side.

Bleeeeeeeeeeeeaaaaah

Bleeeaaaaaaaaahhhhhhhhhhhh.

I've heard they doctor placebos now so that they give side effects just like the real drug.

If this is a placebo I will be forced to go to Switzerland and kick the shit out of the Novartis people.

Poor Planning

I need to be at Big Barnes downtown by 7:30 on the very first day Highway 40 is closed.

(Non St. Louisans - City Planners in their wisdom are closing all lanes of the major highway that cuts east/west. Major highway. MAJOR. Know as "Highway Farty" to residents, not because we're being sarcastic but because that's how we talk in St. Louis.)

So, I'm leaving at 6 a.m. and because ... because ... for some unexplained reason, Gary has to drive me. I am not looking forward to my blood pressure after this.

Peestipated

Did you hear? December is National Hospital Visiting Month! DeNaHoMo '07! Who's with me?

Today I again was back at Big Barnes - recommended by one in seven Republican presidential candidates. I was there for my final visit before being dosed with either the drug or placebo. (So close I can taste its sugary goodness.)

I told the Trial Supervisor emphatically that I needed to be back at work soon, not after four hours, soon. She whipped me right through my blood work, pulse, mental challenge test, and the popular pegs-in-holes test. "Okay!" she chirped, "We just need a urine sample and you can go!"

"You can go." Ha. No. It would appear this was a problem.

"No luck?" she asked when I came out with my empty cup. "Here, have some water." I downed four cups of water. I said I'd give it another "go."

Forty-five minutes later ...

...still there, on the commode, running my hand under warm water, thinking of the ocean, tapping my foot (no doubt in some secret sex code), moving the cup away, moving it back, thinking of baseball, NOTHING NOTHING NOTHING. I was severely peestipated.

In the course of that forty five minutes I drank a scant gallon of water. Finally I emerged again. The nurses started to mock me. Still, I was the center of attention! I jumped up and down hard, and got a laugh, then I pushed on my belly for another laugh - and it worked! I got the urge. I ran back in the bathroom and nabbed a half cup.

Of course, since then I could have drowned the entire staff in what's come out. My pee is not only clear, it smells like a field of flowers after a thunderstorm. You could bottle this stuff.

Dear Barnes Waiting Room Social Club

Dear Ladies,

I must say, if a person does have to wait four hours for an MRI, one could only wish for such a good group of eight fellow women to pass the time.

I particularly liked it when we were comparing diseases and the Young Girl with the Rare Disease sighed, "My disease is so retarded."

I also enjoyed the fact that anyone who was finally summoned to the MRI came back to see how the compatriots were.

And the best part was when Gamin Breast Cancer woman who had waited five hours threatened to storm the front desk, and Sturdy Brain Tumor Woman hopped up and thundered, "I'm with you sister!" Then they went out to confront the front desk and use terms like "unacceptable" and "incompetent." And the staff could only come back with "Free parking." Lame.

I also enjoyed how we progressively all got out our cells and called our doctors to beat up on the radiology staff. I was so livid by the end of it I made no acknowledgment of my technician's existence. The Trial Supervisor wanted to know if "Shawn" had done it this time. "Short guy, balding?" I replied, "I have no idea. I refused to look at him."

Putty in My Pancreas

Hey, do you know if you walk into the hospital and tell every one you meet during the registration and screening process that you don't want Versed, at some point they will be gathered around you and chorus, "No, we are not giving you Versed!"

So, I was convincing. Convincing enough the anesthesiologist recommended I write down my Versed experiences because I made it sound like something from the Book of Revelation. (I did tell him I had blogged it, but I don't think I gave him the address.)

What they did give me was Propofol. It convinced me they were filling my arm with lead through the IV, and then the next thing I knew I woke up and burst into tears of relief when I realized I didn't remember anything. I cried for about 10 minutes, then sniffled for another half an hour, and now I'm damn cranky because I can't eat or drink until six. And then no solid food till lunch tomorrow, and even then a low fat diet for five days. Because Christmas is when you need to be on a low fat diet.

Oh, and the cyst appears to be full of "a thick putty material suggestive of an old organized pseudocyst." So, not even a real cyst. At least it was organized. Because damn, I hate disorganization in a cyst.

So, now it appears I get to barrel through the last few steps in the process, and the day after Christmas I might get my first dose of the test drug. Thanks to everyone for their well wishes.

Pancreactive

Just a short update:

The administrator for the clinical trial got on the phone and pushed my pancreas test from Friday to Tuesday. She kicks ass. She takes names. I don't know what she does, but one call from her made an appointment magically open up, when I was told repeatedly the doctor only does this procedure on Fridays.

I want her to run all my medical appointments. I want her to be my medical life-coach. Wouldn't that be great?

At any rate, I was doing the pre-registration over the phone, and when asked if I had any bad reactions to medications mentioned that Versed made the voices in my head relentlessly loud. (Shush, you have voices too.) And then I cleared my throat and said pointedly, "But I understand Ativan is a wonderful drug." She laughed and I imagine from her response I will be quite happy tomorrow.

Perhaps I'll do the conscious sedation version of drunk blogging. I will try to get on while still under the influence. I'll probably repeat the same thing a number of times, and then confess embarrassingly intimate details of my life. That would be a change.

The Digestive Cystem

So I sat down with the pancreas doctor. He began by asking, "So, what brings you here?"

"I thought you had seen my CT scan."

"Well, I did, but I want you to tell me."

See, that's not a good start. What does he think I'm going to say? Something that breaks the case wide open? "Hey, could this have something to do with that day I spent camping at the Nevada nuclear test site?"

Still, I humored him and spelled out everything he already knew. And he responded by asking me questions I HAVE ANSWERED TWO HUNDRED TIMES IN THE LAST MONTH.

I did get some information out of him. I answered (for the two hundredth time) how often I drank, and the doctor wrote down (FOR THE TWO HUNDREDTH TIME) "rarely."

"Okay," I asked, "How much do I have to drink to crank it up past 'rarely'?"

According to him, drinking routinely once a month rates you an "occasionally." Something to strive for.

So, hopefully Friday I'll be at the lab getting a tube snaked down to my belly. The tube will give me an ultrasound from the inside of my belly (ugh - inner-belly ultrasound gel) and then push out a robotic needle into the cyst and suck out the insides for analysis. "Don't worry, though," the doctor said, "you'll be given a sedati--"

"No Versed. No."

Long pause. "Well, you'll have to take that up with the doctor who performs the procedure."

Laugh with me the hollow laugh of doooom. This means, of course, I'll be taking Versed again. Will it be as bad as the last time? I have an entire bathroom I even haven't painted since it was built, much less decorated.

Then again, I'm bolstered with six years of Celexa this time. Perhaps I'll get that peek into my true self and not see an empty fraud this time. Perhaps the hospital staff can catch the pigs flying out of my ass this time.
 

In Which We Have Hope for a Miraculous Recovery

I've been feeling a little under the weather MS-wise since I went off the Copaxone. It isn't anything serious. When asked by the neurologist, I reported I felt like I was wearing a tight pair of knee socks all the time. Oh, and I had a Nerf football under my right ribcage. I've felt the Nerf football and the tight knee socks before, so it isn't a new problem, just a little flare-up of one from before.

It only affects the sensation outside my legs. The inside of my legs works fine, meaning I can walk and do leg lifts and limbo and such.

One thing that made me encouraged was that it seemed to be getting better this past week. Until today. Today I REALLY felt it. I worried about it all day.

Then I came home. And got undressed. And took off the tight knee socks I had put on that morning.

Seriously, I sat on the bed, shaking my head, looking at the knee socks, and thought, "Perhaps I really do have a Nerf football under my ribcage."

(Birth) Control Freak

As I understand it, the first version of the consent form for this clinical trial said "I will not have babies." (Sign here.) The next version was more specific.

The version after that says, "If you are a woman who can have children...you should use 2 forms of effective contraception simultaneously." Ugh, I thought. I'm on the Pill. Pill and condoms? Have they improved condoms since my fifth anniversary? That's the first and last time I used one, when I was on antibiotics (thus reducing the Pill's effectiveness). I understand they have heated ones now. So, even though you are screwing Latex Man, at least it isn't Cold Dead Latex man.

So I made an appointment to see the OB-GYN regarding getting my tubes tied, especially since Gary's offer of a vasectomy was withdrawn after 12 hours.

Before the appointment, though, the next version of the form came out. "What," I joked before I read it, "I have to use three forms of birth control now?" The nurse and doctor laughed a shade too heartily and exchanged a look. Here's what the latest form says:

"You should use 2 forms of effective contraception simultaneously, at least one of which should be a primary form (see below):

Primary: Hormonal contraception, Tubal sterilization, Partner's vasectomy, IUD
Secondary: Male latex condom with spermicide, Diaphragm with spermicide, Cervical cap with spermicide, Vaginal sponge containing spermicide.

...Total abstinence is acceptable where the age, career, lifestyle, or sexual orientation of the patient ensures the prevention of pregnancy. "

So, here are some choices:
Become a Lesbian
Become a career Nun
Become aged
Use a sponge (they make those again?) plus the Pill
Have a doctor install an IUD while I'm getting my tubes tied
Get my tubes tied and Gary's tubes tied
Get my tubes tied and use the Pill

Or, what I really want, which is to just go ahead and have whatever type of freak MONSTER babies that might come out. I would so totally keep it in the bathroom.

I-can-has-iodine?

LOLPancreas

Hai!
I R in Ur Abdomens
Making U all worriedz.

Oh Noes
Pancrees tests is hard
Don't knows till Caturday.

(Ahahahahahah. CAT scan. I kill me.)

(It occurs to me Mom now thinks she's having a stroke. Mom, go here.)

Test-a-Thon

At first I thought, "Enh, they don't want the details of my day at the hospital being tested to see if I am now well enough to be in the clinical trial." But then who do I see visiting via a link Andrea posted to Amanda's blog? Many people. And I feel no hesitancy in telling you this: they stayed put in the "In Which We Mock Our Illness" category. I follow my stats closely, and not a single one nipped over for a peek in the "Great Hall of TMI: Must be Over 18 to Visit" category. Not like the day the Riverfront Times people visited. You could read the RFT minds as you read the stats. "Hmm, well, this is -hey! Is she naked? Let's check out THAT page!" and away they'd link. Not so Amanda and her friends from Ballastexistenz.*

*360, Monday night, Finding Amanda on CNN. I'm curious to see it, especially having read  her comments about it on her blog.

(Update: Oh, cute. Suddenly The Great Hall of TMI is swamped. I can SEE you!)

So, today I visited the doctor(s) at the Center for Advanced Medicine in the belly of Big Momma Barnes downtown. I had test after test after test: five doctors, four therapists.

Dermatology: my first test of the day to see if I could successfully get naked and be peered at. I passed. I felt quite special in that I got to see the doctor ahead of all the others in the waiting room. Nyah! I felt like a piece of meat, but a well-marbled piece of steak meat.

Pulmonary: a test to see if I could pull air into my lungs consistently while a therapist yelled at me "SUCK SUCK SUCK KEEP SUCKING NOW SUUUUUCCCCKKKK"  - I failed. We had to do it again. Mom told me I'd laugh, and she was right.

CT scan: I was feeling more like London broil than steak by this time, but that might have been because I was aware the machine was photographing thin diagonal slices of my abdomen.

Disability test with my former neurologist, Dr. B________: Quite painless. He said he didn't remember who I was. I suggested perhaps this was because I had gained fifty pounds since the last time I saw him. He was quite agreeable but asked me no questions. This means I was not able to respond  shortly, "That question is not germane to the conversation we are having," which was the last thing I think Dr. B_________ said to me. I felt like a Grade A hunk of meat, though. He was impressed with my ability to walk, not so pleased by my poor hopping skills.

EKG with the MS study nurse: I laughed when she said, "Now I'm going to take your right arm and reposition it." She had just shoved my left breast up and over into my collarbone to get to my ribcage to plant an electrode there. Did she ask? No. Did she say, "Oh, let me rotate your boob around like a stick-shift?" No. Oh, but my right arm gets all kinds of respect. Piece of Meat Status: Brisket.

Cognitive Test: I can put pegs in holes! Nine of them! And take them out! Faster even with my left hand. I can NOT listen to a series of two numbers, add the most recent and the second  most recent, say the answer, hear another number, add that to the most recent, say the answer ... am I making it sound hard? It was. I failed. I am the stupidest cut of meat on the cow. I am the cow hindquarters.

Holter monitor: I'm still hooked up to this thing.  Piece of Meat Status: Ground Chuck.

And finally, It appears that I am a spotted cow. A 2cm lesion on my stupid pancreas, for which I need to get another test. Meat Status: I am a discolored sweetbread.

On the up side, I'm not so worried about the MS anymore.

Placebo Effect

I've always rolled my eyes at the placebo effect. "Ha," I sneered in That Tone I Have, "These suggestible people who believe vitamins and aromatherapy will benefit them.  Please." 

Well. Rub my nose in my stupidity. I've been without any beneficial MS medication for six months now and I would love me some placebo. Placebos are awesome.

Let me tell you, MS symptoms can be greatly relieved by sticking a needle in your thigh every night. No nightly needle? You start to notice what's really wrong with you.

I've felt pretty sickly and symptomatic this past few weeks. So bad, in fact, I metaphorically snapped my fingers in the faces of the Friends and demanded "Pity me!" Then when they made their attempts, I cried, "You aren't making me feel any better! You suck!" Yes. I'm not proud of it. I've given up the right to call them Heartless Cows. (Yet I retain the right to put that link right there.)

I decided today to make myself a placebo. I figured since MS is all about inflammation, and Naproxin is an anti-inflammatory, I would take two Aleve a day. And damned if I didn't feel better. Instead of tracking every twinge and tickle, it made me attend to every moment I felt even a little more normal. I see you rolling your eyes! Shut up! Eatmahcurlies.

Maybe I'll be on this psychedelic mushroom placebo in the clinical trial. Groovy.

We're at the Part When The Roman Guards ask the Slaves to Identify Spartacus

So I was a little disgusted to hear I have been  too  well to be in the clinical trial for FTY720. In fact, I had a neuro appointment last week and I strongly considered faking a limp, just to spite them. I thought this in particular last week when I had this IM conversation with Caroline:

Me: su does hwe want us to tesat the product befoire or after>
Caroline: Before, I would imagine.
Me: welkl hbouw does he expct us to test it without a sigbed contratc?
Caroline: Get. An. MRI.

Then, Dr. S_________, the doctor actually running the trial, wanted to see me this week. As if I was still a candidate. Dr. S_________ had seen my mother earlier for her spells. That's why I walked in today and said, "Mom said to tell you 'Dalmatian, soccer ball, menu.'" (These were the three words he'd used six months ago to test her memory.) He laughed.

He later tried to test my memory.He said, "I want you to remember three words. I'll ask you later what they are. Dalmatian --"
"Soccer ball, menu!" I finished. Evidently he always uses the same three words. (So, Mom, if you see him again tell him I say "Tiger, boat, violin.")

He also corrected me when I described my brain as looking like Swiss Cheese. "No, it's more like a dalmatian. With the spots."
"Yeah," I said, "When I got my drug list from my GP's file I noticed the medical correspondence kept describing my lesions as 'tiny.'"
"Oh, no. I just saw your MRI. Your lesions are BIG."
Wow, I thought, finally a doctor who is generous with information. Dr. W______ was better than Dr. B________, but this guy doesn't hold back at all!
"Well," he continued, "You do have one tiny pinprick lesion. In your brain stem."
Okay - brain stem? Really? Hold up a moment --
He went on, "But your brain is just right for what we need. CLASSIC MS brain. Textbook! And you're lucky, you don't have any black holes, some people have black holes. You just have two. In spots that are pretty much unused, really..."
So... my dancing skills quadrant? The Portuguese-speaking lobe? Do I still want to hear more? He'd tell me everything if I asked. Let's just not ask right now.

So, at any rate, it would seem the loss of arm function I felt after my arms turned blue was most likely a flare-up: therefore I am sick enough. Now we have to spend a month determining if I am healthy enough. I need to get physicals and work ups from cardiologists to ophthalmologists. Then, if I don't have anything but the MS wrong with me, I get to take either a full dose pill, a low dose pill, or a placebo.

Oh! And I found out the secret to getting into a trial: refuse other drugs if offered. It's a trick question!  I gave the right answer. ("But - whine - then I couldn't be in a trial... pout")

So I'm all happy. I'm just waiting doin' the Spartacus dance. (It's easy, you just stand up. Okay, that would be funny if any of you had actually seen Spartacus.)

Still Not Spartacus

Well, I am probably not going to be in the clinical trial. I am bummed. (I coulda been a Spartacus, instead of bummed, which is what I am.) It seems I am too well. I haven't heard the official "No thank you," but it doesn't look good. Pout.

I realize I should be happy I haven't been ill enough this past year, and I am glad, but I decided to give myself one night of pouting. I took to my bed and called up the Discovery Health channel. There it was, Mystery Diagnosis.  I of course would have preferred Born Without a Face or Life With No Limbs or Who Needs Skin, but, hey, you work with what they give you.

There was this woman on Mystery Diagnosis who was just plodding from doctor to doctor. They all dismissed her, and I could have laid down cash that she had MS. But, even better! She had my old friend Myasthenia Gravis. Just like my brother!

(This is a family joke. My brother doesn't have Myasthenia Gravis. However, when we were young we watched something on public television about it. The next day, little 10 year old David told my mother she needed to get him to the hospital right now because he was sure he had Myasthenia Gravis.  My parents disagreed. I think it was the way he kicked the ground vigorously while screaming that he had a muscular disease. For quite a few years, every time my parents noticed Dave had a lump or a hangnail, they would intone "or....is it....Myasthenia Gravis?")

So, not only am I well, I do not have Myasthenia Gravis. So the Discovery Channel again fulfills its mission in shifting our perspective.

In Which The Heartless Cows Redeem Themselves

After I had the bad Copaxone reaction, my doctor said he'd see if there were any other options. We'd tried the interferon therapy (I developed antibodies) and the Copaxone treatment (turned blue) and the Tysrabi therapy was for more serious MS cases.

So he called back a few days later and left a message saying I might be eligible to be in a clinical trial. It was a message, so he didn't hear me screaming "Yes! Yes!" Almost since birth I've wanted to be in a clinical trial. I wanted to be one of Jonas Salk's kids and test out the polio vaccine. Who wouldn't want to be in a clinical trial? You can make a contribution to science without having to take physics.

"But what if you get the placebo?" Hey, don't knock the placebo-eaters. They contribute just as much information as the people getting the real drug. So, as you can imagine, I was elated.

Gary was not elated. Gary wore himself out being the angel sitting on one shoulder imploring "Don't do it! You might get the drug and die from the side effects!" then fluttering to the other shoulder to be the devil shrieking, "Don't  do it! You might get the placebo and your MS will get worse!"

I pointed out to him that he was ignoring the one possible positive outcome. "I don't do positive! I am in charge of negative!" I told him we'd be tabling this conversation until he could accept some positive thoughts. I check back every few days. Still no progress.

However, the Heartless Cows I Work With have redeemed themselves. They have been supportive, even if they don't all totally agree with the idea.

Keep your fingers crossed! I still have to get through the screening. If anyone knows the "right" answers to get in a phase 3 double-blind clinical trial for FTY720 Fingolimod, let me know.

Invisible Disability

When I was 11 or so, a friend asked, "What's wrong with your Mom's hand?"

"Nothing, " I said. Still, this crazy girl kept insisting something was wrong with Mom's hand. I guessed that maybe it was dirty? No. Eventually she said, frustrated, "It isn't the same as the other one."

"Oh, that!" I exclaimed, "Oh, that's just from when she had polio." And then we tried to cook instant pudding in my Easy-Bake Oven.

I suppose other people notice Mom's hand at some point. It is smaller than the other. The fingers are delicate, and her pinky is perpetually raised. I suppose it's like a plant that isn't getting enough nutrition from the roots, so it grows a little spindly and in unusual directions. I never really notice. I still don't notice; Mom frequently has to remind Gary and I that building shelves in the laundry room would be a lovely idea EXCEPT SHE CANNOT RAISE HER ARMS ABOVE HER WAIST IF YOU'VE FORGOTTEN, ELLEN. So, you know.

I think that's typical of kids with disabled parents.  A similar scene is documented in a fine book called Waist-High in the World (though I of course prefer the alternate title the author considered, Crotch-High in  the World). The author is in a wheelchair from progressive MS, and reports people generally don't look at her.  I can't give it a purely unbiased recommendation, because the copy I read had Mom's wry annotations.

I ate that book up. It isn't all about being in a wheelchair, though it mentions how those in wheelchairs are invisible. Oh, that reminds me, check out what happened today. We have a co-worker who uses a wheelchair: Mark. Today when she saw Mark in passing, Caroline gave him a cheery hello, which Mark didn't answer. "Mark," on closer inspection, was actually an office chair with a box perched on top of it.  Caroline foolishly told me about it. HAHAHHAHAHahahha. Heartless Cow.

In fact I brought Waist-High In the World out today to see her take on incontinence, since I received my MS baptism today. It seems a lifetime of Kegel exercises cannot hold their own against a bladder infection backed up up by a quart of water and a grande cappucino. Gary, of course thinks this is hysterical, and GROSS, and a good amount of I AM NOT CLEANING THAT UP! and much conspiratorial discussion with the dog about the INJUSTICE and how I should be put in the crate. Plus, when I turned my back to go to the bathroom for the fiftieth time tonight he brought up a "Hot Sexy Girl Pee" web site on my laptop.

And yeah, it's gross, but it isn't as funny as Caroline saying "Hi" to the box sitting in the office chair. I know that's what you're still laughing at.

Tea and Sympathy

Preface: Here is a conversation I had earlier with some "friends." Specifically, Friend #2 (Libby, aka Hot Mom), Friend #3 (Marcia, aka Marcia Cohen), and Friend #4 (Caroline aka Carolyn). I'm not calling them by their assigned Friend numbers, I'm calling them by their given names in this transcript. I transcribe, you decide.

Marcia: "Ellen, did you tell them" (gestures at others) "what you told me about your new medicine?"

Caroline: (With an expression of concern) "What happened?"

Ellen: "Well, it's no big deal. You know I've got this new MS medicine, Copaxone. I was in the hotel in Kansas City and I gave myself my shot, and pulled out the needle, and I couldn't breathe. So I staggered into the hotel room, and lay on the bed, and then I got very red and my back spasmed, so I fell on the floor. And Gary was running around yelling that I needed a doctor, but it was exactly the type of side effect they describe in the Copaxone brochure. And it was over in 15 minutes or so."

Caroline: "That sounds scary."

Me: "Well, it would have been, except I knew it was the side effect. They say 10% of the people who take Copaxone have it."

Marcia: "Listen carefully. Nine. One. One."

Libby: "Yes, you should have called the hotel doctor."

Me: "Why? They would tell me it was a side effect of the medicine. Besides, that one wasn't so bad. It was what happened night before last that was bad."

Marcia: "You mean when you almost died?"

Caroline/Libby: "What?"

Marcia: (laughing) "Because you don't know about 911?"

Me: "Shut up." (To Caroline and Libby, who still appear to be sympathetic.) "Okay, so I gave myself my shot at home, then I started to feel flushed, then I had trouble breathing again, so I lay down." (Marcia at this point is giggling, which makes Libby giggle.) "Then I started puking. Gary said I was puking 'violently,' but Gary's never seen anyone puke before, so he isn't a good judge -"

Libby: "Wait. He's never seen someone puke?"

Ellen: "Well, he doesn't puke, because he was born with an extra-long uvula and it rested on his gag reflex and dulled it. So he doesn't puke, and I try to avoid puking right in front of him -- why are you laughing?"

Libby: "Thank God you never had children." (Caroline and Marcia are just amused because I said 'gag reflex.')

Me: "Okay, well, not only did he see me puke, for some reason I peed on myself every time I puked." (Everyone laughs at this unsympathetically.) "So after I stopped puking in the bowl and peeing on myself I started having chills, so I sent Gary away and just lay there a while. With the dog. Mac was sweet, except he kept putting his paw on my windpipe."

Marcia: (snorting) "He was trying to tap out Nine...One...One..."

Libby: (snorting) "He was saying 'Don't die! Don't leave me with the man who makes the Cone of Food!'"

Me: (turning to Caroline, who at least has the grace to appear to look concerned) "So, I was having these violent chills, and I was hugging myself, and I didn't realize it but laying down makes it harder to breathe. Just so you know, if you ever have trouble breathing you shouldn't lie down, you should get into a comfortable seated position." (Caroline nods solemnly.) "Anyway, when Gary came back in after about fifteen minutes of this, I took my hands out from under the covers and they were this weird color of gray-blue. I thought, 'Oh, I hope Gary doesn't notice that,' but then Gary screamed 'Your lips! Your lips are blue!'"

Marcia: "This is hysterical!"

Libby: "Oh, what if she had called 911? They would come and say 'You are cyanotic,' and she'd say, 'No, it says in the drug information booklet, 'The drug may cause cyanosis. See? It's right there!'"

Caroline: "Hahahahahahaha"

Marcia: "Her last words, 'No, I know what this is, it's a side effe - gaaaaaaaaaaaaaaaahhhhh...'"

Caroline: "HAHAHhahahahHAHAHA"

Libby: "HAHahahhaHAHAHHA"

Me: "Are you through?"

Marcia: "What do you have against 911?"

Me: "Okay fine, if my hands had stayed blue I might have called them. But Gary held me so I was sitting straight up, except I was kind of jackknifed in bed because he also put my feet up because he said I was in shock."

Libby: (doubled over with laughter) "A 'comfortable seated position.'"

Me: "Look, I was able to breathe and I turned pink again" (this was met with much laughter) "and the chills stopped. Then in an hour my fever was down, and the next day  I couldn't quite feel my hands. But they're better now."

Marcia: (laughing) "'Side effects: May cause death and loss of hands.'"

Caroline: (laughing) "So, did you call your doctor?"

Marcia: (laughing) "No, that's like calling 911."

Me: "Shut up, you know I called my doctor. But I called the Copaxone people too. They said it sounded like the classic injection reaction that ten percent have - "

Marcia: "Oh, you mean the ten percent who die?"

Me: "No, no one dies. Because the Copaxone nurse said they only have the reaction once - "

Libby: "Yeah, because they die!"

Me: "Seriously, they said it's rare to have the reaction twice" (I just ignored the 'Dead people can't take shots' this time) "and that my reaction was particularly violent. So, I shouldn't take the Copaxone till I talk to my doctor."

Everyone: "No! Get out! No, really? AhahahahahahHAHAHAHHA."

Me: "And then I talked to my doctor, and I got as far as 'blue' and he said, 'Yeah. This is not the drug for you.'"

Epilogue: So, I get to be drug free for the next two weeks, then the doctor wants to decide what to do next. I'm guessing it's on to Rebif, or else I'm flying without a net, since Tysrabi is really for more advanced cases. Hey! Maybe I'll have an exacerbation! That would amuse Marcia, Libby and Caroline to no end, I am sure.

Semi-wrong Answer

I got a phone message from the neurologist last night.

"Mrs. S______, I'd like to discuss the result of your interferon neutralizing antibody test with you. I'll call back Saturday or Monday."

On the one hand, we all know this is not the right message. The right message is "I've reviewed your test and everything looks fine."

The wrong message comes from the office staff, and is "The doctor would like you to come in so he can discuss your test results with you."

Not sure where this falls. It's pretty late Saturday. I get the feeling the office staff will be setting up an appointment with me Monday. And really, all it would mean is a change in medication.

(Brief MS lesson: the current thinking is ones immune system is out of balance. Plenty of "find and kill the bacteria" cells, never enough "just chill out, dude, bugs are dead, stand down" cells. Hyperactive kill cells muscle their way out of the bloodstream into the brain and start fragging a specific brain cell called myelin. Pansy-ass chill cells weakly call out "Game over, dude, game over!" from the bloodstream, but are ignored.)

I have three remaining injection options, all with their good points:

One strategy doctors use to fight MS is to literally have their patients inject themselves with more of the chill cells, or inteferon. There is still one brand of inteferon I haven't tried, Rebif, which is actually a triple dose of the inteferon I took three years ago.

Copaxane, which is just freaky. I love the way the Copaxane works. If I understand it correctly, you inject decoy myelin cells directly into your bloodstream. That way, the kill cells can ambush the fake myelin without having to leave the bloodstream and cross over into your brain. "Fight them here so we don't have to fight them there!" the kill cells shout. They lazily pick off the decoys and don't invade the brain.

Tysabri, which Teflon-coats the walls of the bloodstream so the kill cells can't break through into the brain. They just slide around and bounce off the walls on the veins and arteries. Bwhwhwwhahahaha! Hilarious!

Yeah, before you ask, they all cost as much as the stuff I'm on now. I'm not going to look up which are covered by my insurance and which aren't, because there's a chance the doctor will call Monday and say "Hmmm...yeah, your tests look good. Have a nice day."

Health Update

As of today I have started with a new insurance company. This means my drugs will now be $150 a month instead of $400. Gary can go back to tipping five dollars for a seven dollar plate of food.

As my parting shot to the evil former insurance company, I went to the neurologist on Thursday. As usual, we had a nice chat (all about me). He dismissed my rationalization that my right hand wasn't less coordinated but that it just seemed that way because of my increased left hand coordination due to my mad guitar chord skills. On the other hand, he dismissed the chorus of co-workers who told me that very day that I had been limping. He saw no limp, just the typical awkward pelvic-thrusty rolling gait I've had since jr. high.

However, since I'd had the Elmer Fudd lesion, he decided to check to see if my medicine was still effective. Evidently the body will build up antibodies to any foreign substance you put in your bloodstream, including a natural one like interferon. With my old drug, Avonex, this didn't affect the effectiveness of the drug, but the Betaseron gets all snippy if your body starts attacking it.

So I trundled down to the lab, where I waited patiently for the registrar to find the code for the Interferon Neutralizing Antibody test. She had to get on the phone with support and I suddenly heard her say in a hushed tone:

"Oooooo... It's a red cap test then. I seeeee." Then she looked at me with awe.
I swelled with pride. I had no idea why.
She hung and and to reward me for my patience told me my blood would be drawn into a test tube with a red cap. The red cap test tubes were sent to Mayo, so it might be a little -
"Mayo!" I squealed, " Like as in THE Mayo clinic?"

Evidently so. It seems my little red-capped test tube will be analyzed at the same spot Bono's blood was analyzed. How cool is that?

I hope they charge that insurance company out the ass.

Silent Music Lesions

I came home Friday to a voice mail message from my doctor. "Ellen, I wanted to give you the results of your MRI -"

He went on to say that in a side-by-side comparison with the last MRI I had three years ago, I only have one additional lesion. (A brain scab, to the rest of the world.)  I don't have any active flare-ups (brain sores), so even though I appear to be a klutz I have no excuse for my current lack of coordination.

I haven't had any documented flare-ups in the last three years. You can have lesions without flare-ups, these are called "silent" lesions. When I first heard the doctor use this term I had to smile, because all I could think of was Elmer Fudd saying, "be vewwy vewwy qwiet."

So did this new lesion come and go without any outward signs? Could be. Or, as I surmised a year ago, it flared-up in September 2005, as you can see here if you make it to the end of the post. The odd foot sensation may have gone, but I was still left with the lingering music fascination. So as I see it, I lost some white matter in my logical left hemisphere, and my creative right hemisphere picked up the slack. 

Or, maybe I've just been listening to some really good music:

(I know! Is that the perfect surprise for a beginning guitarist, to watch the fretwork as the two frontmen for her favorite band play in a bathroom? There are more at http://www.youtube.com/profile_videos?user=NettwerkMusic .)

My MRI

I actually got my MRI tonight (at seven POST meridian, thank you) and I am sure it will now sit on the doctor's desk while he takes a month-long vacation. Seriously, his vacation starts Friday.

As I slid into the machine, I thought two things:

"MY GOD how fat am I? I don't remember my arms scraping against the sides of the MRI before!"

and

"What does that little sign by the red light say? That's tiny print.  Do...not...look..directly...at...(ow!)...laser."

When I slid back out forty-five restful minutes later, I mentioned to the technician that they might want to reconsider where they put the don't stare at the laser sign, and she said that in the past she would tell people to close their eyes until they were all the way in. That just made them look for whatever dangerous thing it was they weren't supposed to see. And, she said I was one of the last people to use this MRI, because it was ancient and they are retiring it next week.

"It's small!" I cried.

"Yes," she said, "It's our smallest one."

So, I'm NOT fat, the MRI just shrunk.

Sick of Doctors

Monday - I get lucky this weekend wake up with a bladder infection. After wasting forty-five minutes at the Primary doctors office, I find they have changed the rules and now instead of just looking at my urine they want to look at me. This means I have to make an appointment. I leave the doctors office without being seen and go buy cranberry juice.

Tuesday - I go to my Gyn appointment. It's been too soon since my last one, so the rules say I have to reschedule.

Wednesday -

a)  I go to my Neurologist appointment. The doctor times how long I am able to stand on one foot with my eyes closed, and I've dropped from seven seconds to five. This would concern me if I ever stood on one foot with my eyes closed. He orders an MRI because "You might not be as well as you think you are."

b) He also sends me to get a urine sample and after that to another test to see how much is left in my bladder afterward. I have only 16milliliters left. The nurse is dismayed.  "That's good, isn't it? I'm supposed to be empty. That's the point of the test." "Oh, yes, your doctor will be very pleased," she says, clearly unhappy that I am as well as I think I am.

Thursday - I sleep 16 hours.

Friday - I am called to come in a hour early for my MRI, because they have to test my blood because it appears people have been reacting poorly to the fluid they shoot you with beforehand. They've been having kidney failure. I come in when told, an hour early, to be told they can take my blood but not analyze it so I have to come back next week for the actual MRI.

I am pissed. Pissed beyond all measure. It all seems to be designed to ferret out things that don't bother me and make me think I am sick, to protect me from eventualities that well may never happen. And to ignore my bladder infection. I'm peeing all over that MRI machine if I ever get into it.

What a Bargain

A little math for you:

A one month supply of my anti-MS drug, full price:
$1,600.00 (Or One THOUSAND six hundred dollars and 00 cents, to be exact.)
(Per shot, thats $106.666666666666666666666666666666666667, to be exact)
My insurance pays 75%! Woo hooo! Cutting the price down to a mere:
$400.00 a month.
Of course, I always listen to my Mom, so I am on Gary's insurance, which pays 60% of prescription co-insurance. That knocks it down to:
$240.00 a month! Awesome!
And since we'll be using Gary's FSA to reimburse us that $240.00, we effectively get 30% back at tax time, since the FSA is taken out before taxes! I don't understand this at all! But it sounds good, and it brings the total down to a paltry:
$168.00 a month! That's ninety percent off, people!

But wait! There's more! When I had to take the big upfront hit of a three month supply at $400.00 a month yesterday, I of course bitched to Gary. To be exact (because I'm all up in my own face with the exactitude today), I bitched to Gary after the three month supply was FedExed to the office today. I've haven't had the meds while I've been working out these new insurance details, so I promptly coaxed a roll of fat up over my pants and shot myself up right there in the cube. (And that'll teach the new guy to ask me what's in the FedEx box.)

Gary emailed me back:

$168/month is only $5.60 a day.  I think that you are worth $5.60/day.  We can make that up easy by tipping 15% instead of 20% at restaurants.  Currently, I tip 20% because I am bad at math not because I am generous.  From now on, I will use the calculator built into my Blackberry to calculate 15%.  There, your drugs will now cost us nothing.

Because I know healthcare costs are always described as "spiraling," and because Spiraling Healthcare Cost is a hot topic, I just want to alleviate your concerns:

A) I paid for the FedEx myself.
B) Oh, just imagine what I would cost in wheelchairs and private nurse/companions.
C)  Socialized medicine doesn't seem to be the answer. As I understand it, Canada and England have elected to wait to see if the drug is effective before it will be put on their program. (Because ten years worth of data is inconclusive?) Both countries have an even higher incidence of MS.

So, hey, fellow Anthem Blue Cross/Blue Shield members, thanks for the big cost savings! I'll pay you back when your kids get the croup.

Doctors are MESSING with my head

Doctors are mean. They are tag-teaming me and playing mind games.

I have to start with an update. I've gained back half of what I lost on the (almost) year-long Jenny The Bitch Whore Craig diet. The good news is that I didn't lose that much, so I've only gained back about seven pounds.

So, last Thursday I was in the neuropsychiatrist's  office, and the subject of my weight came up. I told him I was fat but happy. I said, the way I see it I'm like a dromedary, using my fat as a Celexa-storage system until the day I become crazy again and my fat spontaneously dissolves in order to release all the built-up antidepressant.

I refrained from clutching my breasts as I said the word "dromedary," so he took me seriously.

"Ooooh," he said, "We have something that can help with that." And then he wrote me a prescription for Xenical, one of those mythical fantasy drugs that absorbs fat. (Yes, they make those now.)  My first thought was "My GOD -- how fat AM I?"

I hesitantly took the prescription. and we discussed how the stuff works. Evidently only half of its power is its ability to absorb fat, the other half is in the deterrent factor. Evidently if too much fat leaves ones body unabsorbed it results in Irritable Bowel Syndrome, which always sounds to me like Sarcastic Tongue Syndrome that spread to the bowels.

"Oh," I said, "it's like Anabuse for food."
"Well, sort of. Take the prescription, think about it, and consult with your GP first."

It scared me enough that I did consult via e-mail with my doctor, who e-mailed back, "It is likely to wreak havoc with your system."  ... So...that's a no, I guess. (Of course, he feels coffee, tea, soda, alcohol, and any other "strong drink" wreaks havoc. Mormons. They're everywhere.)

Mean doctors. It's like my doctors are playing "Keep Away" with the drugs.

Get In Line

Often, I put one song on repeat so it etches itself into my brain. I can then sing lustily and loudly in the car and be assured I won't mangle the words, at any rate. Thursday's song for the day? Get in Line. And can you think of a better  song to belt in the car on the way to the psychiatrist?

Whatever could they want from me?
Is it just a part of a giant government conspiracy?
I gotta go see my doctor about this itchy pentagram-shaped rash

Sigh, yes, Thursday I went to the (clench teeth) psychiatrist. (unclench teeth.)

I'll blithely tell you I went to the urologist, turdologist, boobiatrist, and any other specialist embarrassing to discuss. But the  (grit teeth) psychiatrist? (spit, unclench.) The doctor that proves I'm crazy? Not comical wacky crazy. Disturbed crazy? No, I don't like admitting that.

I think a large part of it stems from for many years not knowing the difference between psychologists and psychiatrists. Some people think they are the same, or that the only difference is that only one can prescribe medicine. But no no no. Psychologists are the ones who blame your mother. Psychiatrists don't care about your mother.  If they ask about your mom, it's only because they spend half an hour observing you for twitches and sweating and crazy eye-rolling, and that can get awkward without chit-chat.

But here's my dodge. From now on I'm calling him my neuropsychiatrist.  I can call him that, and I should, because that is his title. Also, somehow I feel the "neuro" prefix shifts the blame from me to my neurons, being nibbled away by my immune system. Oh! I could call him my neuropsychiatric multiple sclerosis psychospecialist.

Dictate a memo to myself
Try to find if I'm the only one in complete health
Consult contemporaries if there are some to see
There really isn't anyone who's in my league
My leeeeeeeaaaaague...

The Amazing Talking Face

What struck me as I had my six-month checkup with the neurologist is how well we communicate.  In particular, we have a fine non-verbal communication.

I am always called on the carpet for my pointed non-verbals. In my first job my boss pulled me aside to suggest I stop being so rude to Maria. "But I've never said anything to Maria!" I protested. The boss suggested I might want to tell my face to shut up, since my face was betraying how I really felt about Maria. (Yeah, couldn't stand her.)

If my face doesn't get me in trouble, then it's "The Tone." Often when I ask, "what exactly did I say to offend you?" the response is "...nothing...but you had this Tone."

That's why it's nice that if I'm evidently screaming non-verbal cues at maximum body-language volume that I have a doctor who gets it.  We had a nice chat; I shared my new music interest ("Gotta have a hobby" he said); I shared my lack of cognitive dysfunction in the face of my Chemistry workload; and I rose to the challenge of the  "Grab my finger" neuro test by suddenly snatching his fingers out of the air as if they were flies. This tickled him.

I thought it all went well until it was over and I was sitting at the desk waiting at to make my next appointment. He appeared behind me,with "one more question - has your mind been racing at night lately?"

Now, if you didn't catch the non-verbals, you would think I said "no" and that was pretty much it. But as it actually happened:

He asked: "One more question - has your mind been racing ... "
My eyes narrowed as my head  pivoted upward to look up at him with an expression of "Oh, so THAT'S what you're thinking now? I'm manic? Are we back to that bullshit again?" He started to laugh, backed off a few steps, and patted my shoulder as if to say "don't hurt me."
" ...  at night lately?"

"No" I said, in the Tone, distinctly and pointedly.   And archly, oh so SO archly.

"Well okay" he laughed, "I just had to see if I needed to reduce your anti-depressants."

"I knew the guitar-playing confession would get me in trouble," I said dryly.

Can't a girl be happy without being too happy? Sheesh.

Is This Going to Win Me an MRI?

Tomorrow when I have my 6-month checkup with the neurologist, he will ask if I have had any MS symptoms. I will have to tell him Marcia has been counting every time I choke at work (and thank you, Marcia).

(I need a 'sincere' emoticon so people know when I'm not being sarcastic.)

Oh, and I have to tell him about my new personality trait. That I am of late a music-lover.  Forty CDs in the last 6 months. Is this excessive? That I have joined a fan club. Granted, it's the BNL fan club, and how could you not join a fan club of a band that uses lyrics like "tableau" and "pedagogue?" Still, I don't think this is normal.

Oh - and that I'm going on a cruise with said rock band. Well, next January. And I'm psyched about it.

Oh - and that I've almost filled up my Nano in 3 months. AND not to forget: I've taken up the guitar after a lifetime of complete music disinterest.

All those things he'll probably write off as "patient presented with mid-life crisis" and will focus, as usual, on my handwriting, gait, and mental competence. (This is probably the first time I won't shrug stupidly when asked if I've been "cognitively impaired." I always want to drool a little when I answer that question. But THIS time when he asks about mental competence I intend to casually mention I went in to this work-related Chemistry project at a grade-school level and sucked up Chemistry in a month.  Bwahahahah.) We shall see.

Flowers for Algernon

I thought this regression into adolescence was going to stop, but now it appears I'm no longer fourteen; I am ten. I was sitting with Gary, watching a duo play drums and electric guitar on tv.

"Hey," I said, "I could learn to play the guitar. You could play the drums, and I could play the guitar."

"Sure" he said in a studied flat emotionless tone.

I turned to see the sarcasm I expected in his face, because I have so little musical talent. I can play "Mary had a little lamb" on piano, and I learned a total of one song on the violin. ("French Folk Song". I can still hear it. Kind of a squeaky little tune.)

"No, really" he said to my face. "We could have a combo." Not in an Mickey Rooney "Let's Put On A Show!" tone, but sort of encouraging.

"Okay," I mused, "Arzaana-fay hasn't been using her baby Fender. And she could get the amp back from that guy in the band."

So now I'm committed.  (Not literally, yet. I think Gary would have to file some papers.) In a few weeks, check back in and see me say "Hey. I think I'd like a pony."

Our Second Adolescence

When you get MS, you prepare yourself for the typical MS symptoms. Not that I'm disappointed, but I've had MS for almost ten years now and there has been no disability. (And I'm all prepared!) Instead, I am plagued by the quirky little aberrations that occur when one loses chunks of ones brain to ones immune system.

For example, one night several years ago I woke up and found a little spinning wheel directly in the line of vision of my right eye. It was a beautiful bright green. The G in the RGB. Radioactive Cat green (http://www.allposters.com/-sp/Radioactive-Cats-Posters_i837903_c19914_.htm). Before you ask, it does not talk to me. Yes, it's not my only friend, but it's a little glowing friend. I imagine my immune system just took a chunk out of some key area. It only appears at night, and only if I've been sleeping a few hours and I'm woken up.

Usually I'm woken up by the dogs demanding to go out. That provoked another MS quirk about two years ago. One night I woke up and let Doug and Mac out. Mac came back in after moving his bowels and was so delighted with himself he rolled on his back and split into two dogs.

"Cool," I thought, "Now I have three dogs."

I went back to bed and told a very confused Gary what had happened. (Eventually he just said, "Shut up and go to sleep.") I lay there, so so pleased Mac had learned this new trick. And then, somehow without opening my still-open eyes, I woke up. My eyes had been open, I had been tromping around the house and yard, and I had conversed with Gary - and evidently I did it all in my sleep. I checked - only one version of Mac.

A month or so later I woke and was disgusted because Doug had relieved himself all over the house. At least ten times. I got wads of toilet paper and soaked all of it up, then I went back to bed. I was thinking about it the next morning, trying to determine if it was a dream, when I rolled over and saw a wad of toilet paper on the floor in the bedroom. And another in the hall...and the kitchen... about ten in all.

When I mentioned this to the neurologist, he said it was REM Behavioral Sleep Disorder, and some "normals" have it too. The part of your brain stem responsible for keeping you still as you sleep just stops working. I don't think it's happened since then, so it must have just been a temporary exacerbation and my brain rebuilt itself. But see what I mean? I prepared myself for not walking, not for sleepwalking.

My most recent brain aberration happened about two months ago. I started with a paresthesia (abnormal nerve sensation). This one felt as if the soles of my feet were size eight and the bones and muscles had shrunk to size seven. Then I began to get "into" music. I haven't ever listened to music just for entertainment. It's never affected me that much. Suddenly, I need the speakers in my ears glutting my head with my tunes. My brain has been spinning for two months with lyrics and licks and drum solos. I sit around and listen to music. And pine. And sigh. And fantasize about what I'm going to do with my life. I am fourteen. (Oh, and not to put too fine a point on it, my Celexa-stunted sex drive has returned to a daily fourteen year old level of interest.)

So I have gone from a content 43 year old who listens to NPR to a pining fourteen year old who listens to BNL. (Oh yes, Barenaked Ladies. I am SO close to joining the fan club.) I haven't read poetry since I threw my Norton Anthology across the room in college. (Dover Beach. All I have to say.) I haven't written poetry since Mrs. Mulvaney asked what process I go through when I write a poem and I said "Well, first I make an outline - " and she laughed. And here I am sighing like a GIRL and thinking poetic thoughts. And writing in, if not a diary, a blog.

The neurologist asks me every year if my handwriting has changed. I fully expect to start dotting my i's with little hearts and smiley faces if this keeps up.

Five Second Rule

God is again punishing me for having sex with my husband. I have yet another bladder infection. As I am a virtuous patient, I trundled off to the doctor to get a culture and antibiotics. I have the sterilizing/wiping/urinating process down cold now: a result of the dozens of UTIs and the dozens of peeing misadventures I have had.

So, I wiped, peed, stopped, positioned, aimed, and peed some more. Then, still in pee position, I put the full sample cup on the floor in front of me, mindful of the day I dropped it in my lap while putting on the lid. I carefully got the lid, carefully positioned it, and gently pushed - and the cup slipped out to the side and was sitting there with my pants around my knees, my ass in the air, looking at a spreading puddle of pee.

My instinct took over. With one hand I grabbed the cup to save the trace of pee still in there and with the other I got wads of toilet paper, and managed to get the entire sample absorbed into one big soggy wad. Instinct did not then guide me to flush the sopping mess. I saw my hand go over the cup and squeeze the urine back in.

I was immediately concerned. What had I just mixed in to my sterile urine cup? I might be diagnosed with pollen, or Dutch Elm, or dust mites.

"Oh well," I shrugged, "Five second rule."

Obviously, when the assistant came back with my immediate results I had an infection. Your usual cloudy urine and bacteria. No horror at my asbestos-tainted urine, no harm, no foul. "And just in case these successive infections are a result of something more serious, we're going to send the sample off to the lab." Harm. Foul. Good time to confess? No. Evidently not.

And it is our little secret. I am confessing only if the results come back and I am written up in medical journals as a rare case of foot-in-bladder disease.

A Visit to the Hospital

I checked in the hospital for the IV steroid treatment a week ago. When a bed opened up, and I toted my stuff up to the room and was disconcerted to see that they had not cleared the corpse out of the other bed. The feet were stuck out at odd angles and a sheet was wrapped tightly around its (her?) face. I averted my eyes, well, and then I stared, because I'm me and it's a corpse. Besides, really, all I was staring at were bedclothes, since it was swaddled in a sheet from head to toe

I was a little too creeped out to go over and touch it. (Evidently I do have standards!) I thought I should just take care of my business in there and get settled in and stake my claim. Step One, unpack. Had my own nightstand, had the bed by the window. Put on my hospital socks. Adjusted the bed for reading and pulled out the excellent book a friend loaned me: Lucky You. (Unfortunately this was a large print edition and every resident and nurse tagged me a having visual disturbances since I was reading this book. ‘No,’ I'd say, ‘Holly just clicked too fast on Amazon.’) I was almost totally comfy. Just one more thing. So I huddled under my shirt and was snaking one arm out of my bra, because, it's a hospital. I have on the hospital armband and less is expected of me.

It was at that moment the corpse whined, ‘May I go out in the hall and listen to the pretty music please?’

NOT a corpse! Then the creepy Pretender Corpse pleaded hollowly over and over again ‘Please I beg you may I go in the hallway where the pretty music is? Please I beg you may I go in the hallway where the pretty music is?’ I had never actually been creeped out in my life until that moment. This, mind you, still with the sheet swathed and constricting her face. It was like that nasty Munchhausen's disease, when people pretend to be sick and go to the hospital for attention. But this woman had Advanced Munchhausen's and had to pretend to be dead.

When the pleading continued for two minutes, a nurse arrived and said cheerily to the Corpse-wannabe, ‘Hi! Mrs. W_______!’

‘Please I beg you may I go in the hallway where the pretty music is?’

'We can't put your bed in the hall. Is the light hurting your eyes?’

Well, of course it was. Anyone could see that. Evidently this woman's medicine caused eye crusting and pain and she was afraid the light from the windows was blinding her. Plus, she was in diabetic shock and hearing things, but the drugs they gave her for the mental problems her stoke gave her threw off her blood sugar. So it was blood sugar crazy versus stroke crazy. Simple case. Just tweak the meds and there you go.

Two hours later, her blood sugar was finally down to 200 and I saw her face. She had peach hair. She asked for something to write with and I volunteered a pen.

Well, those of you experienced with demented hospital roommates will not be surprised to hear that when I came back from the bathroom, Mrs W_______ had tell-tale blue felt tip marks traced down her legs then scribbled around a bandaged wound on her ankle. Which, I imagine, must have itched.

I asked for my pen back.

‘Oh no,’ she said, innocently, ‘I need it.’

‘Why?’ Because it's always good to get in a debate with a crazy person. I won't report the debate. It ended up with my seeing the pen as a danger to herself and others and my saying ‘I need my pen back.’

I gripped the pen, close to her doodly blue ankles, and she grabbed on, and I'm stronger. She is now a little inkier. I went off to inform. This was when my relationship with Mrs. W________ began to sour.

Turns out Mrs. W_______ had run off three other roommates. Not by pretending to be a corpse, no no no. Not by scamming pens and wounding herself. No, but by spending hours saying ‘Please I need my coat. I'm cold. Please I need my coat. I'm cold.’ I gutted it out in silence, but the neurology ward at Barnes has cameras trained on every bed and they can tell when the roommates begin to get on Each. Others. Nerves. (It is a neurology ward. They know nerves.) Finally the resident came in and and said ‘Do you think you can take that all night?’ I burst into tears and said ‘I don't KNOW where her coat is’ and I was hustled off to another bed. So. One Roommate down.

I Go Insane: Part the Third

At one point in the year after I was diagnosed as (ha) bi-polar, I began having my strange thoughts that all my friends hated me, and if people didn't say goodbye with the right expression on their faces I would cry all the way home. If Marcia said hi to Libby before she said hi to me I would obsess. This is not situational sadness.

One would think I would have recognized the depression when it came back. Here's how crazy I was: I argued, "But Dr. Guiffra, they really DO hate me. Marcia used to say 'hi' to me first, and now she says hi to Libby first, and I know it's because she can see what a bad person I am. I can see it in her face. I think I need therapy, not drugs. I'm a Very Bad Person."

"No," he said. "Just try these anti-depressants in addition to the bi-polar drugs. Just for six weeks. If you're still a bad person after six weeks we'll stop the drugs and start some heavy duty therapy."

And of course, I listened to him and the medicine made my brain chemistry all better. (Every once in a while Marcia tries to make that face I described to her as the Marcia Hates Me Face, but usually she cracks up.)

At the next visit, he noticed I've gained twenty-five pounds (and how could you not). So he suggested I go off the current 'mood-swing medication' and instead try a different 'mood-swing medication' for a while, one that makes you LOSE weight. (Joy, joy, and even greater joy.) Then he continues (in his Peruvian accent) "and then I think maybe you aren't having mood swings at all. Let's stop that medication all together. Maybe you were just a little depressed when you first came to see me."

I would like to say I gaped in disbelief.

Or, I would like to say I jumped on him and hit him with my little fists and yelled "I told you bastards that two years ago!" But no. It is testament to my trust in him that I said, instead, "Are you sure? I was really upset when I first came here."

He said, "Well, sometimes depression can exhibit itself that way. Not typically, but sometimes."

Still blinking against the bright light outside of the cave, I said "So I'm not bi-polar?"

And the lying bastard said "Oh, I never said you were bi-polar."

I piped up with, "In the second paragraph from the bottom of the letter you sent my neurologist, gynecologist, and general physician." (YOU LYING DIMINUTIVE BASTARD I thought.)

He looked it up and yes, there it was. He said, "these things are tricky. You have a family history of bi-polar behavior, plus your MS, but now maybe I'm th