Queen Mediocretia of Suburbia

Bon Mot In Waiting

Now that the news has broken that some wealthy Moms hire disabled tour guides so their kids can go to the front of the line, I can not WAIT until the MS gets me. I'll be plunked into that wheelchair and announce, "I'M GOING TO DISNEY WORLD!"

Vitamin D

Monday: No New Lesions! No! New! Lesions!

Later That Same Week: The neurologist's office called and said the results of the vitamin D test he ran were low. Low normal is 30; I am 13.

When I was first diagnosed, that doctor said they speculated MS had something to do with how vitamin D is metabolized. It made sense, because people at the equator don't get MS and they have plenty of sun, and sunshine helps you make your own D. (Sunshine makes me throw up. I always puked on float trips and camping trips. Sunshine is not "healthy" for me. Exercise makes me barf too. I see a trend.)

Anyway, at the time, that doctor said that taking extra D would not help. Perhaps they thought it was a correlation and not a cause. That was years ago. It seems that now they think that big doses of D will be beneficial.

I start off at 50,000 units once a week. It's prescription, otherwise I'd be slamming back half a bottle at a time. 

I just can't wrap my head around it. I know there was a time a few years back when everyone had the D test and everyone was low. There was a time in the 70s when vitamin C was supposed to cure cancer.

I am skeptical, but they know what they're talking about. Big Honking Doses of D seem to be recommended for people with autoimmune diseases. Okay then. I'm doing this for the 80 year old me, the one that'll have brittle bones because calcium crept out because I didn't get my vitamins.

Perhaps I'd feel better about it if they charged me 4K a month.

Fifty at Fifty

1995-2010: Over 15 years of MS, I've accumulated 50 "silent" lesions: ones that didn't result in a flare-up. That's 3.33 lesions a year. Only two of the 50 were noisy enough to break though my oblivion, so I've only been in the hospital twice. That's one active lesion every 7.5 years. That is well over the average of one every three years.

(I sound smug, don't I? Hush. You'd be pleased with yourself too. It's a stupid brain, but at least it's discreet. Evidently that's where all my discretion is hiding.)

2011-2013: So, I started 2010 with my fifty vewy-vewy-qwiet lesions. How many do I have now?: Fifty! No new lesions in 2011 or 2012.

The neurologist let me know. We did the seated happy dance together. "The drugs work!"

So, holding pat at fifty.

Then again, it is possible that lesions level out when your estrogen dries up, given that they surmise hormones and MS might be linked. Or, maybe lesions top out at fifty. Maybe they stop counting at fifty. Or maybe it's like the rings on a tree: you earn one for every year you've been alive. No, then that means I'd have been dead the last two years because NO NEW LESIONS.

Duuuuude.

I didn't even know there was a sublingual pot spray for MS. And now I can't use it. Damn.

LONDON (Reuters) - There is little evidence to back the use of a cannabis extract spray made by GW Pharmaceuticals for spasticity in patients with multiple sclerosis, according to a... report in the Drug and Therapeutics Bulletin (DTB).

Sativex is sold as a prescription drug in Britain by GW's partner, German group Bayer.

Well, it's for spasticity, so I couldn't use it anyway. If I hadn't fixed that frozen shoulder I might have passed that off as spasticity.

GW Pharma said the article contradicted the opinion of 22 separate national authorities in Europe and around the world that have granted approval for Sativex. ... The drug is currently sold in Britain, Germany, Spain, Denmark, Norway, Canada and Israel.

Can you imagine? Pot, but you don't have to smoke it or ruin a good batch of brownies.

Evidently I Am Weird

An odd thing happened in Physical Therapy today.

I was negotiating with the PT, because now that I'm on my third physical therapist I've found out what works for me. I like the numbers.

How many of these stretches will you be doing? Five sets of three? Fine.

Will you give me a three second warning? Yes? Good.

And I get to count how long it takes, not you. I'll count to twenty, then we'll rest, right? Thirty? Twenty five. Okay, thirty, but I'll tell you when I'm done resting.

So we got it all worked out so there were no surprises, and then on the first round he decided to increase the pressure every ten seconds. Fine. FINE. Just as long as I know what's coming.

We did fifteen sets of thirty seconds. For the second to last one, he pushed really hard the last ten seconds. I was squirming in pain already, and then he pushed more, and it got so ridiculously painful I laughed for the next ten seconds.

For the last time, he did it again, and I laughed uncontrollably again, along with some uncontrollable cursing.

WHO LAUGHS AT PAIN? I DO, evidently.

I looked it up and it seems common. Women report laughing during childbirth. I've never laughed at intense pain before. I've laughed at Gary's intense pain, of course, but never my own. It wasn't funny at all, it was painful, but so absurdly painful I laughed. Like a Nazi or something.

Here's the upside: on the last one I was counting my three sets of ten, and the PT claims I counted "nine ten eleven one two..." So that means I get a credit of one second on Friday.

Looks Like I Picked the Wrong Week to ...

Early last week, I decided to cut my Celexa in half yet again.

Last Wednesday I came home and cranked it back to where it had been.

This Tuesday I took an extra pill.

And now they're saying Obama lost the debate?

Looks like I picked the wrong week to cut back on my Celexa.

Shoulder

Have I mentioned my shoulder hurts?

Well, it does. I decided that it might be tendonitis and that the cure would be to ignore it.

Soooo .... that was six months ago.

It got worse, so I headed to see the GP this week. He pushed my arm all about and said,

"You have a torn rotator cuff ..."

(I've have a torn rotator cuff before, from an ill-advised reach into the car's back seat, but it went away with rest and relaxation.)

"... but since you've had this so long I'm afraid you'll need to go to physical therapy."

(I've been to physical therapy before for ... an unrelated issue. You remember.)

I began to laugh at my memory of my pelvic floor PT, and the doctor caught on and said, "Yes, make sure they stay in the shoulder area." He kills me.

Well, arm therapy started today, and it was painful yet interesting. It would seem I have rested and relaxed my way into a frozen shoulder. The "Ignore Your Body" dictum that has served me so well with my MS has been my undoing. So first, to thaw my shoulder (I don't know if that's what it's called) I am to:

1) Stretch it with pulleys
3) Stretch it with towels
4) Stretch it with broomsticks
5) Attach electrodes to it and zap it until it jumps like a lab frog
6) Stretch it with my other arm
7) Allegedly have an ultrasound waves shot at it. That was right before the ECT therapy so I don't quite remember it.

Thank GOD no one tried to electrically stimulate my frozen Kegel muscles.

 

So now we're playing the political MS card?

I just saw this tweet:

I did love Michelle Obama's speech tonight, but I blinked a few times at the reminder that her father had MS and never complained. Was it an obvious comparison to Anne Romney, who has MS and was devastated and had to buy a dancing horse to cheer herself up?

It seemed very pointed to me.

Actually, the first place I turned after the FLOTUS speech was FOX News, because I wanted to see how they'd react (tears?). I heard "So, this was a speech about the economy," and then I changed the channel. I mean, that was a stretch.

But is it a stretch to think she brought up the MS to remind us that Ann Romney is more of a whiner than FLOTUS-pere, or to remind us that she has strong arms and is the fitness FLOTUS and the other girl is sickly?

Here it is in context:

My father was a pump operator at the city water plant, and he was  diagnosed with multiple sclerosis and my brother and I were young. And even  as a kid, I knew there were plenty of days when he was in pain.  And I  knew there were plenty of morning when it was a struggle for him to simply  get out of bed.

But every morning I watched my father wake up with a smile, grab his walker, prop himself against the sink and slowly shave and button his uniform. And when he returned home after a long day's  work, my brother and I would  stand at the top of the stairs of our apartment, patiently waiting to greet him, watching as he reached down to  lift one leg and then the other to slowly climb his way into our arms.

But despite these challenges, my dad hardly ever missed a day of work. He and my mom were determined to give me and my brother the kind of  education they could only dream of.

I don't know. If I were cynical I'd think that was to make us picture Ann Romney in a walker. (Shaving.)

Medicine Withdrawal

1) One Pervy Dream.

2) One Sleepless Night.

3) Many On-Line Purchases.

That's an old photo. Since this morning I've also bought another sweater and a jacket. Foot cream is scratched off because it has arrived. And after I typed that sentence I resisted the urge to order an emery board on-line.

The flour, incidentally, is fancy expensive pasta-specific flour. I'll be adding it to the $40 tin of saffron I bought last week and making the most expensive home-made pasta in the world. The batteries? Worth the three dollar shipping.

I still am holding out against the temptation to buy these:

... because I can only find them in that color and my size for $330.00. I will never have enough money to spend that much on shoes that weren't custom-built for my feet.

I'd much rather have this for my medicine withdrawal than that feeling of abandonment and hopelessness that I had last time.

Mrs. Science Reports: A New Trend in Prescription Dosage

When I went to the neurologist back in January, he mentioned there might be a new clinical trial to assess efficacy of a 50% dose of my current medication. I asked, "Will it cost $2,000 instead of $4,000?" and the answer was no.

(I wondered why they would like to cut the dose in half, and I thought it was because the FDA is concerned about side effects and my health. It occurs to me just now that the makers might want to double the profit margin.)

So, not only might I be taking less MS medication, the psychiatrist thinks I might be able to get off my Celexa entirely. No brain drugs at all? I reminded him what I was like four years ago when I forgot my pills for two weeks. He thinks that might have been a reaction to dropping off the drugs too fast.

Then we had a very frank conversation about how no one knows how any of these SSRIs work. All the seratonin knowledge I swallowed whole has no real basis in fact. They say seratonin's the explanation, but tests don't back them up.

We already took me from 40 to 20 last year, so now I'm going to 10, then 5, then (CRAZY LAUGH HAHAHAHAHA) nothing. When I cut down on my meds last year Gary said he could see the change immediately. I had him promise to let me know if I seem to be sliding in to something worse.

I really don't know if this is going to work. Still, it seems to be all the rage to have doctors take you off drugs.

"And Richard Cory, one calm summer night ... "

... well no, I'm not going to put a bullet in my head, but I have been irrationally glum given my excellent circumstances. No amount of kits can cheer me up, not even this guy with his little pink tongue, not even three on one tree.

Look how big my babies are getting!

 

All I can think is that I have Seasonal Affective Disorder, but it's tied to summer, not winter. It makes no sense. All I want to do is sleep all the time. I did that all day today, and I feel like I'm just counting time till I get back to work, but at work I feel like I'm counting time to get to the weekend.

Of course, the shoe-buying continues. These will show up this week and will have to go back immediately. Four-inch heels. What was I thinking?

Manic shoes!

(Speaking of shoes, I did see something delightful this afternoon on CNN. Anchor Don Lemon was reporting on the news story that cliams you can tell a person's personality by their shoes. In a nutshell: Black or brown new shoes = no confidence, colorful old shoes = confidence.

Don Lemon held up his shoes for the expert he was interviewing. "So, what do these shoes mean?"

"They mean you're gay, Don." the expert said.)

Gary claims to feel much better and intends to ignore all symptoms from now on, now that he knows he won't die. Gary will live! I should rejoice! What's wrong with me?

Corningware lid asks, "Why so sad, girlfriend?"

Cough and Effect

I am slowly determinig what makes me choke, what makes me cough, and what makes me stable. I still haven't gotten an official reflux diagnosis, but I don't think anyone will disagree. "Doctor, I choke when I drink that.":Then don't drink that."

Bad for me:
Coffee
Dark chocolate
Mozzarella
Alcohol (but I may keep testing this)
Baked cheetoes
Orange juice

Good for me:
Apples
Potatoes
Milk chocolate
Cheddar
Starches
Vegetables
Magnum mini ice cream bars
Pasta
Chicken
Steak
Tuna steak

Aside form the baked cheetoes, I can do withoout the rest.

Patient, Heal Thyself

Last Friday, when I drank a cup of coffee and coughed it up a few hours later, I thought I should call my doctor and make an appointment so I could get some of this Prilosec stuff -  the Industrial strength version, not the OTC version.

I checked in on his blog first, in much the same way I can see my friends cramming through my blog before we have a GNO scheduled. I read his suggestions on how patients should probably try Plan A: Eating Right, before jumping right to Plan B: Handy Dandy Drugs. (I'm paraphrasing.)

So, instead of making an appointment I went grocery shopping. No fatty foods, coffee, alcohol, or (as it turns out) sugar. Friend #2 told me about sugar setting off reflux. My response was, "OH come ON." Seriously, what is left? Fruit. Vegetables. Tuna. Chicken. Bread, though, there is that. Pretzels. That's what I bought.

My healthy diet lasted one entire day, then the next day I began adding in sugar. Apple Jacks? No problem. Pot roast? Pot roast went down and stayed down. Milk and cream cheese! Decaf cafe lattte!

No coughing all weekend! But then  ....

Six hours ago I ate a chocolate cupcake. That cupcake has been lodged in my chest so firmly it makes my ears itch. Itchy ears, headache and nausea all evening.

Maybe there's some type of decaf chocolate cupcake? Maybe I could eat half a cupcake with no ill effects. How can I split this hair?

The Year In Coughing

Thanks to Rachel from the cruise, I get to go talk about my health on a panel on my birthday. I will not monopolize the panel, I will not monopolize the panel. I do like talking about my health.

Old people talk about health all the time. I'd like to think it's because we  they  we  theywe want to educate our peers (and the young'uns) so they know what to do when it happens to them, and it will. Stock up on Poise pads now,children.

So, now I'd like to tell you how to cure your cough.

My cough began last summer - only it wasn't a cough so much as a choke followed by a violent eruption of all body fluids. I'd be sitting there, usually drinking but sometimes just sitting, and then I felt like fluid bubbled up from my lungs and I choked on it.

This led to the urine tests and hiatal hernia and the vaginal massages starting in September, and while I have (*kegels*) improved control down there (*kegels*), at odd times I'd still choke. Not every month, like I did last summer, but perhaps once ever three months. I wrote that off as the hiatal hernia, and I imagined I could feel my hernia sliding past my diaphragm and that's what caused it.

Time for a Mystery Diagnosis expressive eye close!

Over the winter, I developed a cough. In the spring it turned into a cough that would turn into vomiting. Last month it turned into a daily cough that would show up between four and four-thirty, and all I had to do was go in to the bathroom and cough till I puked. Then I was fine untll the next day at four.

A few weeks of that and I was back on Google, and I found that people with acid reflux will cough until they vomit. Of course, that makes sense, all that acid bubbling up .. from your stomach? Not your lungs? I suppose that could be. One would think I'd have heartburn, though, which I do not. Still, I made a mental note to avoid caffeine, acidic foods, and alcohol.

The next day, people on Facebook raved about Sweet Tea vodka with lemonade. By then I'd wadded up my mental note. What harm could there be in Sweet Tea (caffiene) with vodka (alcohol) and lemonade (acid)?

So I bought a bottle and I poured a small glass of Sweet tea. I didn't realize it was actually large glass of vodka. I threw in some ice cubes made of lemon juice (ala ~~Silk) and took a gulp. A gulp of sweet tea VODKA. When I could breathe again I diluted it, and I let it sit on the counter to think about what it had done.

Half an hour later I choked into a spontanous gyser of pee and vomit. Well! That diagnosis was confirmed. I must have acid reflux minus the vital heartburn symptom.

I went right out and bought a two-week Prilosec OTC pack. That was two weeks ago. After about a week the four p.m. puking was over, I can sleep without sitting up, and my cough, when it happens, is back to the piteous kitten hack I had two years ago.

Of course, now that I know what to look for, there are resources all over the internet spelling out just what my problem has been. The pamphlet that came with the 14 day pack recommended I not rely on it more than three or four times a year. If it comes back I'll pay a visit to the doctor.

And yes, I am ignoring the suggestion that chocolate can be a trigger. Life can not be that cruel.

Nice notes from call with drug company

I was so happy to hear the $679, and then she said "and then zero dollars a month after that."

These results are not typical. Or perhaps they are. I don't know. I don't care. Evidently there are all kinds of plans and funds available.

So! I was excited enough to use three exclamation points. That's saying something.

In Which I Have Money Worries

I am going to disappoint you. I know why you're here. Escapism. I am the 21st century screwball comedy, the inept and ridiculous well-to-do. 

As I say, I am about to disappoint.

You know how I've been getting that great deal on my MS medication? My MS medication which costs - and again I must say, this is not a typo - $4,000 (four thousand dollars) a month? For which I pay $0 (zero dollars) a month?

When I renewed my prescription, the insurance company rejected my submission for financial aid.

YOU MAKE TOO MUCH MONEY FOR FINANCIAL AID

All caps, bold letters.

No, wait, let me see what they actually said.

OVER INCOME GUIDELINES

I say, good for you, massive drug corporation, you have FOUND ME OUT. I have been scamming you like a welfare queen. I should not be getting financial aid.

That does make total sense to me, and I'm even a Democrat.

But somehow I think a little of this is on the drug company for charging four thousand dollars a month. The questionnaire asked our monthly gross income, and since it was, yes, envy me, over four thousand dollars, I was denied aid.

I do pay for insurance, but my insurance company evidently just keeps laughing at that 4K total. "Per year? What? Per month? Ha! Ahahhaa."  So, the 4K will all be on us. (I say us, because I don't bring home 4K a month. Damn husband, kicking me up into the upper middle classes.)

So, here are plans B C and D. (And E and F.) Update: and G!

Plan B: Call the company, which is in Germany, and see if they know the difference between Gross and Net. They asked about our Gross Income per Month. Perhaps they meant net. Net is sick, since Gary is socking it away for retirement.

Plan C: Negotiate a lower price. Like, say $1K a month. I suppose I should counter their 4K with 20 bucks, and then work up to 1K.

Plan D: Take drugs every other day. I keep having tests that show that I have zero lymphocytes, but the neutrophils have stepped up.

Plan E: Go without drugs. Like a schizophrenic, I feel so well from the drugs that I think, "I don't need drugs!" Then the voices tell me to feed Gary to the groundhog in small tasty bits. I do feel awfully well, though. I know I'm not.

Plan F: The last time I was at the neurologist, he mentioned there might be an official long term clinical trial pending, which I can hope would again pay for the drugs in exchange for my time. Spartacus rises again!

UPDATE: Plan G: I just looked it up and found there are documents with the words "United Healthcare" and "Gilenya " and "Formulary" in the same document. This must be new as of the new year.

Damn! Been so long since I've had a money worry. Why didn't I sock away $48K for a rainy day?

I Thought it Was My Fault

I learned something about MS from Mitt and Ann Romney via the Ladies with Multiple Sclerosis for Newt Gingrich Facebook page.

Mitt Romney revealed to Chris Wallace on Fox:

[After Mrs. Romney's MS diagnosis] "She said 'I can’t cook any more'  ... And I said, look, I don’t care what the meals are like. You know, I like cold cereal and peanut butter sandwiches. We could do fine with that as long as we have each other."

None of my neurologists told me my cooking abilities would decline when I got MS. I guess that's the thorough treatment you get when you're a billionaire.

Aha! So THAT'S What's Wrong With Me.

I have always held that a hypochondriac is just someone who isn't diagnosed yet. There is a bell in our heads that rings long before any illness can show up on a test, but still we get tested and re-tested since we KNOW something is wrong.

Of course, right before both undiagnosed MS flare-ups I felt fabulous beforehand. Not sick, not ever been sick, never could be sick. During the flare-up, however, I read every page of the Medical Encyclopedia. Well, except for the MS page.

On to the present. As you know, I've been overly concerned about this choking business. I've been eating slower, smaller bites, drinking with a straw, and no body fluid eruptions as of late. And then there was the blood clot. I can see you (yes, you, allll of you) developing a theory that all I want is medical attention. The trial is over, and now that I don't see a doctor every few months I feel neglected. (I really do feel neglected now that I have had to part with my therapeutic vaginal masseuse.)

So, my yearly physical (planned, yearly, not pathetic) revealed that I have a specific type of white blood cell in my urine.

"OO! OO!" you cry, raising your hand. "Bladder infection! Bladder infection!"

At the time, I had no symptoms of a bladder infection, and had done nothing worthy of a bladder infection. Still, I dutifully peed, and they found no infection. They figured they'd pass it on to my neurologist because he's the one giving me the MS drug that affects that particular type of white blood cell.

I thought I could ask that doctor what was up at my appointment on 11/1. On my way out I checked the card and saw that I won't see him until 1/11 next year. Numbers! Damn them! Whatever. My urine is clean and smells like mountain wildflowers. No worries.

However, the wonderful GP website alerts me when I have medical test results. Someone did another test, and while the first test showed "trace" bacteria, the same test two days later showed ...

Huge colonies OF Bacteria! 
(That is how I read "*10,000 - 50,000 colonies/ml")

And they are FAT Bacteria!  FAT but Happy!
(Or, as they said, "*Multiple Gram Positive Organisms")

Huge happy colonies of fat INTERSPECIES bacteria! Or ....
("*Greater than two species present, suggestive of contamination")

"Screw you!" I thought, "I'm not contaminated. Contaminated with what? Where would I get some other species of bacteria in me? What, like dog bacteria? Oh... wait... No. No I'm sure that's not what they meant."

And before you assume I wiped the pee off the floor and squeezed in into the cup like that one time, no, I followed all the rules perfectly. I didn't contaminate my urine. Maybe some of my bacteria mutated into a new species of super-happy super-fat bacteria! Ones that don't cause any symptoms of bladder infections!

I figure someone at the lab sneezed into it.

Thoughts Late at Night

It's what now, 1:30 in the morning?

I should be asleep.

I forgot to floss. [Ed. The dentist's assistant still had to use the pick, but not the elbow grease. (Hoping other cultures use the therm "elbow grease.") Note: pick  still makes the same hideous scraping sound, with or without grease.]

Why don't I pee on myself in my sleep? Perhaps I do. Perhaps I should be be-padded right now.

Mom fixed all of her problems with that Vesicare stuff. Of course, she died soon after.

Mom was a widow when she was only 52. I'm almost 50. Then she died at 71. That means I'm 20 years from death. Of course, she'd had polio.

Wait, I have MS. Forgot about that. They say half the people with relapsing-remitting MS segue into the next stage. I guess that means I'll lose bladder and bowel control. Ha. Oh, and then they die, eventually.

So, that's in 13 years or so? So that means I'd die at 62.

But I won't, because I have the milder type.

But since half the people with the mild type get worse, I guess that means I have a 50% chance of developing the serious type.

So ... doesn't that mean I have a 50% chance of dying from MS?

No, my math is wrong somewhere. Maybe it's just a 50% chance I'll be in a wheelchair. Well, no, the secondary progressive type keeps going till you die. I think. That never occurred to me.

So, I have an illness with a 50% fatality rate?

Hey. That's not good.

How is it this never occurred to me before? And why is my heart beating so hard?

================================

Eventually I fell asleep. Then I woke up the next day, TOOK MY NEW HALF-DOSE OF THE ANTI-DEPRESSANT and realized, hey, that's why those thoughts seemed so foreign! Bad thoughts, sleeplessness, what are those symptoms of? Goodbye Celexa, goodbye serotonin, hello REALITY.

So I guess that in addition to my increased sex drive (which I haven't noticed as of yet) I will have changes in mood, sleep, appetite, headache, bowels and heart rate. And ... let's just say I've had four out of seven so far.  Worth it for the sex drive, though, right?

Psychiatrist Visit

"So, how's your sex drive?" my psychiatrist asked during my yearly appointment.

"Gone," I answered.

"How long has it been?" He smiled compassionately.

"Since ... March."  I counted. "Five months."

"Is that causing tension in the marriage?"

"Nope. Gary's 57. Our sex is always great, but it does take a lot of time and effort we don't have, really. We still get along, though."

"So your marriage is good?"

"Yep. We started this new thing we do when we agree on something We both make this "zzt zzt" electrical sound and point at each other's heads."

The doctor was looking at the notes on his lap.

"It's silly," I continued.

He was reading something.

I volunteered, "Now I feel embarrassed."

He looked up. "We doubled your medication when your mother died, but we never decreased it. I think we should cut it in half. That will increase your sex drive."

"Well, I AM almost fifty. I can't have sex forever."

"Your sex drive should go on until you die. Even couples who've been married fifty, sixty years still find alternative sexual activities."

"Well," I said, "I do have battery operated devices that I have neglected the last month or so." (He smiled and nodded and glanced back at his notes.) "I'm not prudish. I mean I know there are plenty of alternatives. Like, I've tried to masturbate with Gary, but he seems to feel that's a very private thing and he doesn't join in. He's very considerate. Like, considerate to a fault. He doesn't even like fellatio. He feels it's disrespectful." I leaned forward. "Seriously, what man doesn't like fellatio?"

The doctor's eyes met mine. "Call me," he said.

...

Yes! That was the exchange. "What man doesn't like fellatio?" / "Call me."

I was indignant for a spilt second, and then for a moment I thought, "This is a test! A test to see if I'm a manic nymphomaniac!" Then I realized this was the conversation from his point of view:

[Dreamy flashback music]

"We should cut your medication in half. That will increase your sex drive."

"Well, I AM almost fifty. I can't have sex forever."

"Your sex drive should go on until you die. Even couples who've been married fifty, sixty years still find alternative sexual activities."

Look at notes about medication. Read notes about medication. Blah blah blah, woman is talking, blah blah. Wait for a gap in conversation. "Call me."

[Back to reality glissando]

So then I said, slowly, "Soooooo .... call you in a few weeks to check in after I try the new dose?"

"Oh, no. Just call me if you start feeling depressed."

.........................

And to think, I was embarassed by the "zzt zzt" part of the conversation.

Birthday: It's not just all about the food

Only, it is. Because the food was great! The rest of the day was not as good.

Food:
Breakfast - Cottage cheese and cantaloupe
Morning snack - Farewell cupcake from the interns
Lunch - Mushroom chicken ravioli
Afternoon delight- Birthday cake (Mocha chilled layered whipped cream cake from La Bonne Bouchee)
Dinner -  Dim Sum and Peking Duck!

 

Delicate little Shrimp Dumplings

 

Left: Sticky Rice Steamed in Lotus Leaf  Right: Pork dumplings

Not shown: Steamed Chicken Paws (feet) because the waiter refused to let us order them.

And the crowning glory:

 

Peking duck with adorable little white buns and cabbage and Chinese parsley. WHICH IS CILANTRO. I thought cilantro was a South American thing, but no, China is also polluted by the foul weed. That was fine, because the Peking duck was not as delicious as the last time I had it. This duck did not require 24 hours notice, so it was suspect anyway.

The Rest of the Day
So, I dropped Gary off at his car and drove home (while Gary ran to the grocery and bought me more chocolate). I was in the garage at home, and I was outside the car, reached through to the back seat to get my box of leftover cake and DAMNIT.

Again.

I didn't choke or cough or sneeze. All I did was reach. And then I peed out. (It's my new term. It has the drama of "bled out," which I need. No one's ever embarrassed by bleeding out.) I immediately employed the Kegels, and ultimately it made a 10 second humiliating experience into a 20 second humiliating experience.

Oh, and Poise Pad? Useless. Well, it protected the garage floor. I was not protected, nor the top half of my pants, which went into the washer AGAIN.

I think perhaps I got the signal from the neurologist's office that "this happens to everyone" because perhaps it does happen to everyone with MS. And there is nothing TO be done. I mean, I'd think they'd want to do more than rule out a bladder infection, or see if it is a neurological problem with voiding or a neurological problem with not voiding, or it it's a flare-up and not a symptom.

I sent an email, and I am just going to proceed without medical advice. So! New plan!

1. I had 2 hours of urine in there, so now I will make an attempt every hour. Perhaps I can empty myself out in tablespoons. HAH! My pee is measured out in coffee spoons! That's what that poem meant.

2. Diapers? I can't picture it. It isn't pride. Let's say I'm in the office, and I lose it in the diapers (because evidently just being vertical can provoke this.) So I go in to the bathroom, and I take OFF MY PANTS IN THE STALL. I can't even keep imagining to see what happens after that. Well, what comes next is someone else in the bathroom says, "Ellen, are you okay? Why are you taking off your pants?" The door doesn't come down to the floor, and by their shoes ye shall know them in the bathroom. (I do have a pair of sandals Marcia has, and when I wear them at work I wonder if people in the bathroom think I'm Marcia.) And then what happens to the diaper? I just can't see a practical scenario.

3. However, after a little research I am reminded of another alternative: the intermittent catheter. And if I had been undecided, this is what Wikipedia says about it:

"Intermittent catheterisation is considered the ‘gold-standard’ of care for bladder emptying."

Sold! Here's my new plan. Every day I pack disposable intermittent catheters (the priciest ones I can find) and use one every two hours and throw it away in the menstrual pad disposal container, because I haven't used that thing in thirty-two years and it is my right.

Upon further research, I find I will also have to pack water-based lube (which I HAVE on hand) and that "Female intermittent catheters are generally about six inches long and come in French sizes. The French sizes range from 8Fr-24Fr."

Yeah, I don't know. All I know is I will be writing my name in the snow at the first opportunity. If I don't need a presciption I'm just ordering a bunch of different sizes and trying them out this weekend.

Heatbound!

Every year, around late November, Mom would go to the Sams and stock up on fluids, soups, bagels, and such. We'd come home, freeze and store all the comestibles, and she'd declare herself "at home for the duration." Socked in for winter. And, truly, she did not set foot outside of the house until April.

Well, I'm socked in for summer. Or, I would be if I didn't have to go to work. I've planned my path from the parking garage in to work for minimal heat exposure.

So, 99 tomorrow. "Heat index near 110F."  Seriously, I may wake up early and go in to work early to bury my car in the cool basement of the parking garage. Of course, my self-destructive psyche chooses now to think, "Oh, I need to garden." "Wouldn't it be nice to go for a stroll down to the river?" And tonight, "I need to get steamed buns and Peking Duck at one of the non-air-conditioned Chinese places east of I-170 on Olive."

Of course, I fight off all those urges. But, you all know the big upcoming conflict: Barenaked Ladies concert on Saturday night.

Here's my plan. First off, the weather is supposed to break Friday.  Saturday is to be cloudy and 94. Still, I might even pack two of those mini-coolers with ice and washcloths. Two coolers. One for each foot. Cotton shirt. Cotton capris. I don't think the sun will require a hat at 8:00 pm. Then, one of those spritzers with a fan packed with ice water. And why not a battery operated fan in my lap? I would buy all these things at the Walmart but then I would have to walk from my car into the store.

Adaptability. I'm going to have my own manufactured environment.

December 22, 2010

 

For the first time in years, blood draws are avoidable. And I had my last blood draw yesterday.

It wasn't for the trial or a check-up, it was for a blood test required by my life insurance. This test wasn't required of anyone else at work, all of whom have the same insurance, so must be a cleverly disguised test for illegal substances. They got my urine and my blood. It's cool. I'm clean. Or, they could be concerned for my health.

At any rate, they added three holes to my body before they got any blood, and that's the last blood I am giving up  until my yearly physical in September, baby. This is my body and my blood, and I am keeping it all inside.

The End of Spartacus

Today I sat in my last waiting room. The clinical trial for FTY - wait, Fingol - wait, Gilenya is officially over.

You would think this is when I get to pat myself on the back for bravely putting my health on the line for the good of humanity. And I would have, to an insufferable degree, only THIS happened Tuesday night.

I was speaking with a new co-worker, getting to know her, and I found she had once worked at SLU Medical. I mentioned I'd met the clinical trial team there.

"Oh," she said, "I might have met them. I was in a clinical trial there."

Let me take a moment to describe this woman. Bright blue eyes, ridiculously adorable turned-up nose, dark hair. As if an artist was painting a study in color and contrast. Angelic.

I asked, "What was your trial for?"

She tilted her pretty head and casually shrugged one shoulder ."Smallpox."

Technically, the military smallpox vaccine, but still. SMALLPOX! Smmaaallllllpox. I am SUCH a LOSER with my feeble MS.

This Week in My Luck

Well, I got good news from the clinical trial nurse. If she wasn't speaking out of turn, I won't pay anything for the drug.

When I complained on behalf of all other people with MS in the world who might feel Four Thousand Dollars a Month (not a typo) is excessive, she explained that somehow it was cheaper for the manufacturer to pay for my tests than to pay the insurance companies. I don't know why the manufacturer is paying the insurance company, or if she got that backward, or what is going on. I pressed that there are a lot of sick people not on the trial and not on insurance, and the conversation turned to how busy she was, and I don't blame her. Still, Spartacus feels bad.

In case I would have been charged 4K a month for drugs, Gary added me back to his insurance, so I'll have to be hospitalized to make good use of that. I might be deathly ill at this very moment. During the last 15 minutes of Desperate Housewives, I ran to the bathroom twice and then barfed in front of the couch. Gary said it was a "Family Guy" style of vomit. Just sitting there, then water hose of vomit, then done.

And when I was in the bathroom cleaning myself up he cleaned up the floor. LOVE.

Streak of luck for the week: Got an 84 on my test, I'm up 4K a month, I don't have to clean up my own puke (priceless).

I Love Passing Tests

I've been dizzy. It's one of the reasons I took off Thursday. Thursday was also Veterans Day, which was the reason the pizza delivery man thought I was taking off.

"No," I said, "I'm really dizzy."

"Like when you lie down or get up?" he asked.

"Yes!"

"I've had that too lately."

Now, I'm not sure what the Pizza Man meant by that. I'm also never sure what Gary means by that when he says the same thing.

Could be: "We are all frail. I know your fears, my sister, and I stand by your side in the human condition."
Could be: "If we both have this it isn't serious."
Could be: "You aren't sick. You are Normal."

I think the last one is what Gary means when he tells me, "I'm dizzy all the time! Everybody gets dizzy when they roll over in bed!"

This is why I found my yearly check-up at my primary neurologist so satisfying today.

I went in and said, "I'm dizzy."

He asked me to describe "dizzy," and he asked, "What makes you dizzy?"

"Lying down in bed, getting out of bed, lying with a hard pillow under my neck, looking up ..."

"Hop up on the table, please."

He had me recline on my elbow, he took my skull, tilted it up and over to a specific spot. My brain spun immediately.

"Whoa! I'm so dizz -"

"Look up here! At my hand."

Which I did, assuming that he was fixing my eye on a point so I wouldn't vomit, but of course he wasn't, he was checking if my eyes were twitching, which I assume they were, because that seems to be the test for benign paroxysmal positional vertigo (BPPV).

Then he had me lie down, tilted my head at some specific angle: whoosh! Brain slosh, look up at my hand, same deal.

Then I sat down in a chair, he tilted, slosh, twitch. Mental note: Never tilt my head at those angles.

He asked if I'd had this dizziness before, and I said sure, back two years ago when I started the drug. "I assumed it was the drug, but the clinical trial doctor said it was ... some position thing - oh!"

That's the difference between being told you have benign positional vertigo and having someone prove it to you by positioning your head. That's the difference between having a doctor say "benign" as in "Your vertigo is benign, stop complaining," and "I'm not even doing an MRI for this, it's so benign."

I came out of that appointment feeling like I am SUPPOSED to have BPPV. That something would be wrong if I DIDN'T have it. That it can be completely controlled as long as I don't let that doctor ever touch my skull again. (There are other treatments, but this is the one I'm going for. It goes away on its own, eventually.)

He's such a good doctor. I'm delighted with him. He makes me feel so textbook. Like the Normal version of Sick.

Les Miserables

The Paris trip has made me feel old beyond my years.

We met an elderly Italian lady who did not speak English OR French but who wanted to find the Metro. She outpaced me. At one point she turned around to see why I had fallen behind her and I said, "fatigué." Gary and I have been saying "fat - ee- gay" and "tray amu-ZANT" since College French. She must have taken College French too, because she nodded, mimed floppy-armed exhaustion, and said what sounded like "Tank." Possibly "Stanco," italian for tired.

Not only am I old, I am fat, and I had a cold. The day that pushed me to my limit was the day we went to the Catacombs.

See these steps?

 

These steps take you 60 yards down, and they make you dizzy. Then you walk through narrow halls. And even when I'm not dizzy, I have trouble walking down halls. I can walk in a straight line in a field, but put me in a hall and I start bouncing between walls like a pinball. So, I do the thing a lot of people do, "Walking the wall." You just keep a hand or finger on the wall at all times so you don't start careening.

Like so:

 

So that worked well enough until one point when the walls turned into this:

 

I kept my hands off the bones for the most part.

 

But at one point I almost toppled over and I had to put my hand out to steady myself AND CHRIST THE BONES MOVED. They look cemented in, don't they? No. Just piled up. They jiggle up and down and in and out. If I'd wanted, I could have pushed my face in to them and left an impression. 

Gary and I both assumed we'd emerge from the catacombs at the side of a gentle slope. It never occurred to us we'd have to climb 60 yards back up. I hate steps, especially spiral steps, especially narrow spiral steps, especially when they go up. When I'm climbing steps at work I always step aside and let others go first, because I don't want to take anyone out when I topple backward. And this stairway didn't allow for anyone to pass. The only good thing was it had a banister.

At about 30 yards I began gasping for breath. I made it the next 30 yards with two stops to try to catch my breath, attempting at one point to use my arms to pull myself up with the banister.

I did eventually make it to the the top (where there is a defibrillator) and into the air outside.

 

(An aside: We got the side effect list for the clinical trial drug, now called "GILENYA."
"Some people who take GILENYA have shortness of breath. Call your doctor right away if you have trouble breathing.")

I've been telling the Financial Adviser that we want to travel when we retire. But really, how will I do this when I'm old? We took a taxi out to the airport because I couldn't put my bruised feet on another cobblestone. I know Big Dot works out on the steps by her house. I need to adhere to a vigorous workout schedule just so I can relax on trips.

Call Me Dionysus!

So, I did indeed contact my clinical trial nurse with my liver numbers (AST-52, ALT-109). She was unconcerned."The FTY720 does elevate your liver numbers, that's why they're a little high. Last time the ALT was 149."

Of course, I sent that new data RIGHT off to the doctor and I am now off the hook for the ultrasound and the liver test in 3 weeks. And while permission was not explicitly granted, I am again NOT avoiding alcohol. I am wine-ready. In fact, I just had some wine.

I still don't like it that much. But I must gather my rosebuds while I may.

My Inner Self

Time: Last Week

Scene: A swimming pool with a domed deep pink roof and curved deep pink walls. Welcome to my bladder.

Swimming in my bladder are some E-Coli bacteria and "innumerable" white blood cells.

One E-Coli says to another, "Do I know you?"

"Perhaps. Are you from the Old Country?"

"Belarus? No. You?"

"Oh, no. My people have lived here for years."

"Me too. It's peaceful. Not like the old days!"

"Heh. Yes, we would be bounced around and around back then. Incredible! It was like a tsunami!"

"The bacteria today do not know what it was like back then. If there was an attack by the White Blood Cells they wouldn't know what to do."

"Here's what we should do. Let's have a drill, just in case there's some activity and we are in peril of washing away or she douses us in cranberry juice cocktail."

"My information says they're going to Paris. We really should be prepared - You! Kid! Don't pee in the pool!"

And ... Scene. This is why we have a bladder infection. It's a pre-emptive UTI.

Call Me Tantalus: Medical Edition

The punishments of Tantalus in Hades were:

1) To stand chin-deep in water, which would drain away when he tried to drink.

2) To have a rock suspended over his head, and

3) To have grapes and fruit overhead, but if he tried to reach for it, it would be lifted up by the wind.

I have had the grapes and the rock overhead since my doctor's office called Friday afternoon. I had my yearly physical Thursday, and the office has my blood results already.

"Your liver tests came back elevated. You need to make an appointment for an ultrasound to look at your right upper quadrant, and then another blood test in two to three weeks. And the doctor wants you to avoid alcohol during that time."

So, here we have the grapes:

That's a lot of open bottles of red wine there. I accumulated those and drank minimally from them in the last three weeks. And now I can't drink any of it. I was just starting to enjoy the wine. Not the Beaujolais, but the Lambrusco was fun and the Pinot Noir was drinkable.

"CHEEEEESE!" I thought. "I have to still be able to eat the cheese! And the macaron! And the ice cream!"

I said, "Wait! How were my blood sugar and triglycerides?"

"Blood sugar 90 ... Triglycerides are 165 ... but that's down from 219 before."

So, I see that as a window of 54 triglycerides I can pack in to my system, and I couldn't ask for better blood sugar. Bring on chocolate and cheese, at least.

I got the exact numbers for the liver test so I could "give them to the clinical trial nurse" (look up what a normal range is on the internet.) AST-52, ALT-109. A little high.

When I got on the internet, of course, I felt the shadow of the rock suspended over my head. I read all the problems I could have. (Meckel-Gruber Syndrome was in the lead. Sufferers often have an extra digit (me! me!) and Central Nervous System problems (me!). However, I didn't die as a child. (alive!))

All this health studying reminded me I needed to create an account on the BJC web site, because they have this new thing where you can get the results of any test you have at a BJC hospital. Results YOU HAVE NEVER SEEN BEFORE. I saw the result of the latest CT scan, including the detail that I have "Healed bilateral rib fractures." When the hell did that happen? I've never cracked a rib. I've never broken a bone.

So, back to the nurse. She said I'll have to get more bloodwork and an ultrasound for my "right upper quadrant" when I get back from teetotalling in Paris.

Finally, she shared one more bit of information:

'"Oh, and your urine shows you have a bladder infection. Of course."

At least Tantalus got punished for something he did. He cooked his son and served him at a banquet. I am being punished with a bladder infection for NO reason. (We're saving it up. For Paris. Yeah.)

Paying For It

"Hey, Ellen," you ask with concern, "You were out in the 90+ heat and humidity on Friday and Saturday and then again last night. Aren't you supposed to avoid the heat?"

WHO do you THINK you ARE to talk - wait. Sorry about that. You're right. I'm taking a sick day today, just like I did yesterday, and I feel guilty because it's another self-induced sick day.

I could have stayed out of the heat and I could have felt fine. Instead, I slept all day Wednesday, then I went to the concert and I'm at home paying for it.

No one else is paying for it, though. I don't have a pressing deadline today. (I suppose you could say Marcia (#3) paid for it because I did have a complex dream around noon in which I found out she summered at a psychiatric institution when she was 12, where they called her "Mershy." One of those dreams so complex you can't shake the idea it's real. Mershy.)

Still, the guilt. "You did this to yourself. This is like calling in sick because you have a hangover."

And more guilt. "If it's not too hot for a concert, then why is it too hot to weed?"

And essentially, "You're staying home so you don't get sicker, that isn't a sick day."

Or even, "They don't have 'My chin feels tingly and I'm really tired' days. They have SICK days."

Anyway, I've been awake for three hours, so it's time to go back to sleep. What are your sick day ethics? Does anyone else feel like this?

In Which I Visit Pre-Reformation Doctors

So, a few weird things happened Friday (you know, back when we had the old, antiquated pre-reform health care) during the Day of the Doctors.

First off, I saw the retina doctor for my clinical trial eye-checkup.

"Have you had any eye disturbances?" he asked.

If he had asked me 24 hours before, I could have said no. But at lunch Thursday I sat facing the window and noticed there was an arc of prisms on the top right half of my right eye. A little like when you look through beveled glass, edges don't line up. So there was a jagged arc of color. For 20 minutes. Freaky. A friend said it might be cataracts.

I answered, "There was an arc of prisms in my ey -"

"Migraine."

"Oh no, my head never hurt. It was -"

"You can have just an ocular migraine. They always usually look like that, a jagged arc."

Now, look here, I thought, we should just nip this in the bud, because we can't be having migraines, ocular or otherwise.(To be more exact, I articulated my denial in my inner monologue as: fuck you, fuck you, fuck any fucking migraine, fuck you and your migraine fucking father.) So I shuttled that right into the Denial Lobe.

==============================

Then, while I waited for doctor number three (neurologist) I thumbed through his book on headaches, where on a random page was Figure One: Migraine Images. Look! Jagged arcs on the upper right of the visual field. Fucking doctor leaving out a fucking book full of fucking lies. You won't see that now that healthcare has passed.

==============================

Then the neurologist checked my spasticity and asked, "Have you been feeling clumsiness in your right leg?"

"No."

Then he wrote down "RL: spastic!" Fucker! Pre-reformation fucker! Thank God they passed health care so I don't have to put up with any more of this.

==============================

He also made the mistake of handing me my checklist on which he had written even more lies, like "brainstem involvement" and "dysphagia" (inability to sit at your desk and swallow you own spit without having it trickle into your lungs and make your legs kick out from under you and alarm your cubemates for three days in a row).

===============================

So earlier tonight I was thinking about this migraine lie and this brainstem lie and this dysphagia lie, and Patient's Rights and my rights to not have doctors lie about me, and I decided if President Obama did actually sign the bill into law I could stand up to these doctors, and I could go to my non-clinical trial neurologist and say, "So, I have this vision disturbance that happened once and this little choking thing that happened three times, and maybe you and I can work on nipping these things in the bud."

And then because the bill will have been signed and my doctor is no longer a slave to these oppressive malpractice rules he can say, "Oh, let's not even worry about those things; I'm sure they will never happen again." He will not be a fucker because we have a new health-care paradigm.

Because healthcare that tosses out words like "dysphagia" and "migraine" and "Tourettes" without any consequence is not my idea of quality healthcare.

Sick in Bed All Day

I. Smell. Bad. I smell like chemicals are leaching through my body fluids. The dog won't even sleep with me. The chemicals are out of balance in every fluid system. Food is digested directly into a sugar slurry and then urped right back up. The brain fluid swishes and makes me dizzy.

I slept from noon till 6, after that I just lay in bed and percolated. And stank. And looked at five-star hotels on-line.

Also, I downloaded the first season of Mad Men. I'll watch it on my own since Gary hates it. (It has no heroes. No one is good. So, no one for Gary to relate to. Speaking of relating to characters, I've only watched four episodes but they better drop that business with Mrs. Draper's hands going numb in Episode 2.)

Eventually it did cross my mind that I've been meaning to pick up the Celexa at the pharmacy for ... Sunday, Monday ... five days now. Better get there. Perhaps that what's wrong, this is the smell of seratonin withdrawal.

Habits of Successfully Sick People

I was getting a lung test for the clinical trial, and the technician lady said, "It looks like you're doing pretty well on this medication. You haven't had any relapses."

"I think I've only had two relapses in fifteen years."

"What's your secret?"

I thought a moment. "I think I'm just not very in touch with my body."

Before I got MS I tried to pay better attention to body signals: the ones that said "You've eaten enough! Stop!" and "You have five minutes to get to the bathroom." After I was diagnosed I woke up each morning and took a full body inventory of every limb. When a hand began to tingle, I'd note the time it began so if it continued for 24 hours I could alert the doctor. That didn't last long, and soon if my right hand tingled, I'd check my left, found it felt fine and I'd spend a good minute flexing and admiring my left hand. For every body part that feels bad there's another that feels okay. (And not to put to fine a point on it, there are always two sets of lips that can be made to feel not bad, not okay, but quite distractlngly good.)

I'm lucky with my MS, of course, I've been in the "tingling / weakness" phase for a long leisurely while, and it can just take its time progressing. But another nice thing about my particular MS is that the nerve damage works in my favor for some things. For example, the nerves that run my lower GI tract will often go on vacation a week at a time, and occasionally for two weeks. I have been told this would cause pain in a normal person, but the nerves that signal pain must be the same nerves that are on vacation. At times people ask me if I hurt my foot, and if it weren't for that I would have no idea I'm limping. The bad nerve that makes me limp must be the same nerve that lets me know I'm limping.

So now after fifteen years, I dismiss my MS symptoms the moment they surface in my consciousness (Most recently: "That's odd, my arms feel numb. It must be from when I turned blue when I couldn't breathe a few days ago. Huh. Weird. What's in the fridge?")

What I want to be able to do is to apply that approach to all symptoms of every illness. For example, right now I'm not dizzy like I was earlier today and yesterday, and my ears don't itch like they did a few hours ago, but still my body says I'm going to puke some time in the next two hours. So, if I take my MS approach, I should:

Lavish positive attention on the body parts that don't feel bad. My feet feel good, for example, I say as I wiggle my feet. Legs to scalp: relaxed and happy, plus I'm in the very soft guest bed.

Make a reliable body part feel good: the Upper Mouth is happy now after the application of a stale homemade croissant. And, bonus? I'll puke that back up in less than two hours.

We'll just have to see how this approach works the next time I have a bad head cold. "Well, the left nostril is stuffy but wow, my right nostril is awesome. What's in the fridge?"

In Which Today I Am Indirectly in the Wall Street Journal and Fortune Magazine

WSJ:Here's my shout out in the Wall Street Journal: The maker of the clinical trial drug I've been testing (FTY720) is going to file for FDA approval. I think it takes 6 months to a year for the FDA to do the final evaluation and interviews and make the decision. And supposedly during that time the maker stocks up on drugs that are soon the be approved. I'm supposed to be on the Extension Phase for the rest of 2010, and then I go off it when/if the drug gets approved. FDA, hear me now, even Satan's Yeast Infection is worth it for this drug. An extra 30% chance of winning on my lottery ticket? Yes. Here's hoping that I have to pay for this stuff with everyone else before the end of the year.

Fortune Magazine:Teddy J was again listed as being a damn good place to work by Fortune magazine. They did not mention the Starbucks in the cafeteria or the frequent free food or the way they get the old group of friends back together. I got a visit from Friend #2 today, she and #4 will be moving in to the same building with #3 and I next month.

Damn, gotta go to bed, gotta be downtown at 8 so I can get two more tests to help progress the drug toward FDA Approval.

Hours Later: I was wondering why I couldn't get to sleep, and I realized: someone might look at the juxtaposition of my two journalistic shoutouts and think I was making a stock suggestion. I am so NOT doing that. I write training. I don't give stock market advice. I am sure if I looked it up there's some fancy disclaimer I could use.

Just Good News

I was curious when the Fingolimod trial nurse called and said I needed to talk with her before I started the extension phase of the trial. I'm going to complete my first 2-year phase in January, so now I go into the extension phase. Saint Louisans: they closed Highway Forty when I started this, that's how long I've been in the trial.

The nurse had good news. A benefit of the extension phase is that even if you had been taking the placebo before, you are promised the real drug now. There are two doses given of the real drug: .5 and .05. She explained both doses work equally well, and since the high dose might have taken out those two people who died, the maker is dropping the high dose and everyone gets the equally effective low dose.

So! I'm pretty sure I've been on the high dose, so this is an improvement for me. Half the calories, all the flavor! Tastes great, less killing!

Yet Another Neurological Humiliation

Went to the Newrologist today. He was putting me through the heel-to-toe tests, and asked me,

"Go to that back wall and walk toward me on your heels."

As I got close to him he said, "Go back and do it on your toes."

I teetered on my heels a moment. I heard Paul McCartney belt "No one will be watching us ... go back and do It on your toes."

Then I realized what the doctor meant. I switched from heels to toes, and started walking backward.

"No," he said, "You're making it too hard. Just go back to the wall and do it again but on your toes."

"Oh!" I spun around, only I was still on my toes and I slammed myself into the wall.

So ... points off for that.

Don' Wanna Hoard No More, Lord Lord.

I treated myself to a three-hour superiority feast this evening. A&Es Hoarders, followed by an hour of Hoarders. Topped off by a little treat. Hoarders.

I am not a hoarder. I just cleaned out the refrigerator at Mom's, for example. I know, she's been dead for a year and a half now. Shut up!  A hoarder would never have cleaned out that fridge. Because I saw one on A&E. Her name was Jill. Great sense of humor.

She fell into the Delusional Hoarder category. There were two types of Hoarders, Delusional Hoarders and Entitled Hoarders. How could you tell the difference? You wanted to slap the flies off of the Entitled Hoarders.

The Entitleds were the ones who had been diagnosed with depression, anxiety disorder, panic attacks. They had their pills, though, and they took them virtuously. Each Entitled suffered mightily through the agreed-to purges. As OTHER PEOPLE CLEANED THEIR ROTTING HOUSES they went on and on about their reactions. "My stress level is at a nine." "I'm feeling anxious. You need to stop before I hyperventilate." "Hold me, I'm having a panic attack." "I took my pills, but I'm still stressed out!"

And the awful thing is, I know I'm not a hoarder, but if I were I fear I would be an Entitled Hoarder, not an amusing Delusional Hoarder. 

So, where is the line drawn between being a responsible mildly medicated person and an Entitled Ass-clown?  Perhaps it's just shutting up. Perhaps I'll be safe if I shut up about "stress." If I never make people change their behavior because they're freaking me out.  Damn - now I remember the last time I was stressed at work I blamed someone else for it. "Stop freaking out, Karla!  Now I'm stressed." At least I didn't whine. I think I bellowed.

Okay, so that's a plan.  I never mention my "stress levels" and instead I say things like, "I feel if I throw away all of Gary's old feather pillows the sky will rain dead birds down on us."

P.S. - edited to add: I know, they are not to blame. They are mentally ill. It's just I hope that I might tolerate all my potential illnesses with grace. Not dignity, that's shot to hell.

2:30-3:30 This Afternoon

My neuropsychiatrist appointment was at 2:00 today. Usually I listen to Get in Line on the way there; this time I forgot. This is what we call foreshadowing.

Saint Johns MERCY! Medical Center is undergoing renovations, so I had to come in the back way. And so, it was a hunt to find my usual parking garage, the Ballas garage (with a star, below):

And I thought, wow, there's a lot of renovation going on. I've never taken an overhead walkway to get to the doctor. They must have just built this. Of course, and I will say this upfront because you have already figured it out; there isn't a lot of architectural variety in parking garages and of course I was in the wrong one. I was in the one with the overhead walkway. See it below? Sure. It seems obvious now. You, all smug with your bird's eye view.

After the appointment, the Ballas (wrong) garage was easy to find. It was 2:30. And I only wandered in the 90 DEGREE HEAT in my SUIT in the WRONG GARAGE for half an hour, looking outside the garage for a walkway and inside the garage for my car:

I intended to post this on Twitter with the blurb: "Do you see my car? Nope. Neither DO I." But I was distracted because my brain was cooking. I connected my last two functioning neurons and went back to try to retrace my way to the mythical overheard walkway. "I swear I went in and I was on the second floor," I thought desparately. "Surely I can tell someone at the Information booth and they can tell me how to find it."

So I went back to the doctors building and with my 100 degree brain, went to the information booth, which was unmanned, and then I decided to retrace my steps from my doctor's office door because the Phantom Walkway was right below it, I swear.

So of course I got lost in Saint John's trying to find my way to the doctor's office where I had been half an hour before.

By the time I wandered from three floors below my doctors office (yards away from the hidden walkway) to where I thought my doctors office was, I had lost another half hour staggering throgh the hospital.

Because Saint John's uses this as a navigation aid:

They have areas: green, blue, purple, copper, yellow, and rose (I suppose to avoid red and its blood implications). There is about one of these signs every area and nothing in the green area is green. Nothing in the blue area is blue.

Still, I did not go straight ahead to find the rose area (where, obviously, nothing is rose except the swoop on the sign), instead I found the main entrance and Main Information.

"You look a wreck!" the information lady volunteered immediately.

"I am lost. My car is lost." I speak in one syllable words. I try to explain the overhead walkway. "It's new. You built it. I was there. My car is there."

Finally, the nice man in the security van was summoned.

"Walkway?" he said, "There might be a walkway somewhere." He is now familar with the walkway because I pointed and screamed "WALKWAY!" when I saw it on our journey to the Ballas (wrong) garage.

Even though I was only lost outside for half an hour, the heat took a toll on my brain. I went back and tried to work, and Marcia can tell you I was not functioning at peak capacity. (I confused the Articulate xml file with the player.html file! There! Six of you know how cooked I was.)

My limited brain capacity slowed down the Marciellen team, so we were still working at ten. I was brain damaged and hot and punchy and hungry then. Finally Marcia and I stopped working and went to Denny's. I remember talking baby talk to the menu and our food (and, earlier, the Articulate player file). I had a burger with an egg and hash browns and cheese ON the burger. Like, breakfast literally ON TOP OF dinner. Anyway I hope the protein helps rebuild my brain.

I Hope I Get Three Secrets Too

This coming week it will have been one month since the last holy visitation by our Lady of the Labia and her miraculous stigmata of the Cooter. Will my crotch weep tears of blood every four weeks?

It is a little like Mary appearing every month to the children at Fatima. We shall see. Given the state of all my other symptoms I appear to be replaying history.