Wednesday, August 27, 2008


Gee whiz, this work thing really gets in the way of your personal life!!

Between work and wedding and physical therapy three times a week, I have no time for anything.

But here are a few things that have been on my mind.


I got a new prosthesis this week. This always makes me cranky and unhappy. It reminds me of all the things that could have been and of what I don’t have. This is usually something I try not to think about too much. But at a time like this, denial, my good and faithful lifelong companion, deserts me. Reality is unavoidable.

I have big green eyes. A few years ago, the ocularist who was making my prosthesis remarked I had beautiful eyes. I thanked him politely but cringed. I wanted to say “You mean I may have had beautiful eyes. I could have had beautiful eyes. I did have beautiful eyes.”

But not anymore.

It just makes me sad.

Living Alone

I am currently living alone for the first time in my life. It is blissful.

I had one 23 year old parasite I mean child still living with me until 3 weeks ago. We had a serious, civilized discussion and she organized herself and moved out as a responsible adult.


In my dreams.

What really happened is she ignored me the day of my eye surgery, went out that night in my car and left me alone for the whole night, let my indoor cats out by leaving a door open and committed various and sundry other passive/aggressive insults to my existence.

So I calmly explained to her why this was a problem for me and how she was exceeding my boundaries.


In my dreams.

What really happened is I had a lunatic, maniacal melt down and did an imitation of the kid in The Exorcist, complete with head spinning and levitation. I think I spoke in tongues too. Because after a while it wasn't even English anymore, just shrieking, incoherent gibberish.

So she is now living with a friend and all are happy. Well, I actually don’t know if all are happy.

But I sure am.


IV Solumedrol, which I have been given multiple times to treat out of control MS symptoms, has many terrible side effects. Osteoporosis, kidney damage and diabetes are all things that it can cause with repeated use.

So what is my concern about this powerful steroid? Excessive facial hair.

Last night I dreamt that dozens of bristly little hairs burst out all over my chin and face and no matter how many times I plucked them, more kept popping up. It was horrible.

What can I say, I’m shallow. A hairy chinny chin chin is a fate worse than death.

Sunday, August 17, 2008

But Wait, There's More...

I had shingles this winter and was really sick. But not that bad. My mother called. She had me at Death’s Door:

Kay: Oh, you poor thing. I am so sorry this happened to you. This is horrible. This is terrible. Oh my God. How are you feeling?
Me: I'm feeling better today. (I hear my father in the background "How is she?")
Kay: (to my father) She says she feels horrible!

Very generously, my parents offered to bring me lunch. They were just going to drop it off, so they wouldn’t even come in. When my mother called she asked what I would like.

Me: Umm, a sandwich would be nice.
Kay: Ok, what do you like?
Me: Um, I like chicken salad.
Kay: Oh, your father and I love chicken salad. A & P had chickens on sale last week, buy one get one free. I stuffed one and roasted it. You know how your father loves that. And I made nice green beans with it. I cut the other one in half and made soup and chicken salad. Your father loved it. He loves soup and a sandwich. It's his favorite thing.
Me: I make good chick....
Kay: Ok, see you in a little while.

P.S. I got a turkey sandwich.

Saturday, August 16, 2008

Kay and Jerry Congratulate Marie

I finished my Master's last summer. It was something I had wanted for so long and I was really proud of myself. When I got my diploma, I called my parents. They were out, so I left them a message.

Here is the return phone call.

I swear I did not make ONE WORD of this up:

Kay and Jerry Congratulate Marie

Mom: Marie? Congratulations dear. You must be so happy.
Me: Oh, I am, it is such a…
Mom: So when are you going to start your Ph.D.? Ha ha.
Me: Well actually, I’ve really been consider…
Mom: Because you have such a love of learning. Wait a minute. What Jerry? Tsk, I can’t hear him. WHAT JERRY?
(I hear my father in the background “Tell her I said congratulations”)
Mom: Your father says congratulations.
Me: Oh, tell him thank…
Mom: Jerry, Jerry, she says she’s going for her Ph.D. WHAT JERRY?
(I hear my father mumbling)
Mom: Your father says that’s wonderful.
Me: Tell him thank…
Mom: So we just got back from the doctor. I have terrible diarrhea and I can’t walk.
Me: You can’t walk?
Mom: No, I can’t walk.
Me: You can’t walk at all? How did you get to the doctor’s?
Mom: I have to hold onto everything. And I have a headache. But the diarrhea is better today.
Me (grimacing; I do not want to hear about anyone’s diarrhea): Oh, that’s good.
Mom: What dear?
Mom: So the doctor says I need to have another scan to check my brain.
Me. Ohhh.
Mom: What dear?
Mom: Wait a minute. JERRY! THERE’S SOMETHING WRONG WITH THIS PHONE AGAIN! So what else is new with you?
Me: Well…
Mom: I haven’t heard from you brother all week. And your sister must be enjoying her cruise. Good thing I didn’t go with this diarrhea. And not being able to walk.
(My mother obviously forgets that she was not invited to go on my sister’s HONEYMOON.)
Me: So I…
Mom: What dear?
Me: SO I WAS …
Mom: The doctor is very concerned about me. JERRY! I CAN’T HEAR WITH THIS PHONE!
Me: Ohhh.
Mom: What dear?

I went through 25 minutes of this: diarrhea, deafness, brain lesions (hers), did I think the lump on my grandson’s forehead was cancer because James would not be able to cope with that he would fall apart (it’s not cancer Ma, What dear?, IT’S NOT CANCER MA!!!!!!!), her neurologist was handsome and she finally told my father he was losing his mind, but she promised him she would take care of him and stick by him because he had been a good husband and that’s just the kind of person she is.

I did not get more than two dozen words in.

OY VEY! No wonder I’ve been in therapy for decades.

Thursday, August 14, 2008

Still Fat!!!!!

i can’t lose weight i can’t lose weight
i can’t lose weight i can’t lose weight
i can’t lose weight i can’t lose weight
i can’t lose weight i can’t lose weight
i can’t lose weight i can’t lose weight
i can’t lose weight i can’t lose weight
i can’t lose weight i can’t lose weight
i can’t lose weight i can’t lose weight
i can’t lose weight i can’t lose weight
i can’t lose weight i can’t lose weight
i can’t lose weight i can’t lose weight
i can’t lose weight i can’t lose weight
i can’t lose weight i can’t lose weight
i can’t lose weight i can’t lose weight
i can’t lose weight i can’t lose weight
i can’t lose weight i can’t lose weight
i can’t lose weight i can’t lose weight
i can’t lose weight i can’t lose weight
i can’t lose weight i can’t lose weight
i can’t lose weight i can’t lose weight
i can’t lose weight i can’t lose weight
i can’t lose weight i can’t lose weight
i can’t lose weight i can’t lose weight
i can’t lose weight i can’t lose weight
i can’t lose weight i can’t

I CAN’T LOSE WEIGHT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I started this blog in February. Ryan is getting married in September. That gave me EIGHT MONTHS to get back to my previously normal size. I was doing ok. I was loving the swimming. I was eating properly and carefully. And then…The Accident.

Four months down the drain weight loss wise. No exercise, except for Physical Therapy, which should count for something because it is such freaking hard work!!

But noooooooo, not for me. It doesn’t matter if I eat carefully and use up what should be about a million calories in pain alone. Uh-uh. Nope. For some reason, the normal weight loss gene has entirely skipped me and I will be fat forever!!!!!!!

And Multiple-freaking-Sclerosis?!?! What good is it being sick if I stay fat?!?! If I had to get a crappy disease, why couldn’t it be one that made me thin?!?!

I am cleared to start swimming again in a few days. I will be in the pool as much as possible. I’ll do the treadmill too. Just like I was doing before my fall.

Something’s got to give!!!!

Saturday, August 9, 2008

Adventures of a Wine Taster

(From last year... )

There is nothing like an MS gathering to depress the crap out of me.

I have a business connection with a very, very nice man whose mother has MS. Earlier this summer, he asked me to join the fundraising committee for a large, swanky annual event that he organizes. It is to endow a comprehensive MS center near me. I thought, why not? I do not get out enough, do not really socialize outside my small circle of dear friends. My therapist, who I adore and am morbidly attached to, is, for good and obvious reasons, always encouraging me to pursue other support resources. And it was flattering to be asked.

So I was on board. The tickets for this wine tasting were so expensive, I could not bring myself to send invitations to all the people who generously support me in the MS walk, so I didn't even really tell any of them about it. I just sent solicitation letters to businesses. My daughter wanted to come, but she wasn't forking over $150 bucks and neither was I for her.

So I went alone.

After a long work day in the city, I knew I would be on my feet for most of the evening. My back really hurts and my legs are wobbly, so I decide I have to use The Cane. It is THE Cane, because it will NEVER be MY cane. Yuck.

Here's a fact that would probably be painfully obvious to anyone but a knucklehead like me: An event that requires one hand for your wine glass and one hand for a plate of hors d'oeuvres will go awry if you already have a cane in one of the aforementioned hands. Something's got to give.

Add an obstinate teeny tiny purse with a very long strap to the mix and you have a disheveled mess.

So there I was, alone, not knowing a soul in the 300 or so people there, futilely trying to keep my purse on my shoulder, pathetically stumbling around on the grass, gripping an empty wine glass and a cane.

I desperately wanted that wine glass filled. To the brim. Maybe even more.

Oh, and I was the only person there with a cane. The only other visibly impaired attendee was in a wheelchair. And I managed to step on his foot. Yep, I stepped on a crippled guy's foot. How is that for mortifying?

I finally found the wife of the chairman, who I've only met once, but she was so, so sweet. She asked if I had gotten anything to eat and I piteously gestured with my full hands. She steered me to a table with some friends of hers, introduced me and asked if I could join them. What lovely people they were! So that was really nice.

Now to get something to eat. I was famished. My wayward purse was left on the table. I would simply have to trust these people with my millions. Ha ha. I gamely grabbed TC (The Cane) and lurched around the maze of tables and chairs, stooped under the ropes around the edge of the tent, gingerly climbed over the wires to the sound system and staggered over to the food stations. At this point I was so hungry I could have used a trough, but I settled for the 4 x 4 inch plate. With the plate in one hand and TC in the other, I had no way to carry the fork. So I slipped it into my pocket. The waiter's eyes bulged. "Don't worry, " I said, "I'm not stealing the silver, I just have no other way to carry it." He looked dubious, but didn't call the dogs.

Back to the table via the same circuitous route. Put my plate down. Take the fork out of my pocket. Take my wine glass and repeat the journey for a glass of wine. Back to the table. Sit down to eat. Realize I forgot a napkin. I practically cried. Started to get up AGAIN, when one of the women at the table offered to get one for me. I was so grateful.

I tuck in to my now ice-cold food, while chatting with these pleasant people. My fork slips out of my numb right hand and lands on the grass. I look at the fork in the grass. I look at the food tables with the forks, light years away, and God help me, I leaned over, picked up the fork, wiped it with my napkin and kept eating. I am sure my companions were horrified. But I figured, it's grass. What is the worst thing that could be on it? Pesticides? So what, I'm going to get a horrible, disabling neurological disease? Too late! I already have one. Ha ha ha.

By this time I was absolutely exhausted. I said good night to my table mates, good night to the lovely wife of the chairman, studiously avoided the man whose foot I stepped on, who was giving me the evil eye, and gimped off into the night.

The event raised over $200,000. So I guess it was worth it. But it left me with a wistful hangover that had nothing to do with the wine.

Wednesday, August 6, 2008

Insider Trading

Tysabri, the medicine I get by IV once a month for MS, has been linked to a number of cases of a devastating, and usually fatal, brain infection again. This is why it was pulled off the market originally in 2004 before being reintroduced last year,

Right before the new reports came out, high level Biogen executives (the manufacturer of Tysabri), began dumping their stock:

…just like the last time:

“The Securities and Exchange Commission filed a settled enforcement action today in U.S. District Court for the District of Massachusetts, charging Thomas J. Bucknum with insider trading in the stock of Biogen Idec Inc., a biotechnology company located in Cambridge, Massachusetts. Bucknum was Biogen’s general counsel until he resigned in March 2005…
…To settle the Commission’s charges, Bucknum has consented, without admitting or denying the allegations in the Commission’s complaint, to the entry of a final judgment permanently enjoining him from committing future violations of Section 17(a) of the Securities Act and Section 10(b) of the Exchange Act and Rule 10b-5 there under. Bucknum also has agreed to pay disgorgement in the amount of $1,938,465, pre-judgment interest thereon in the amount of $102,005, and a civil penalty of $969,232, for a total payment of $3,009,720. Finally, Bucknum will be prohibited from acting as an officer or director of any publicly-traded company for a period of five (5) years from the date of the entry of the judgment.”

(The whole press release, dated 1/12/06, is here,

Here are two things that I would have done instead to make the punishment fit the crime:

First, I would create a foundation and have that $3,000,000 put into a trust fund to financially support people with MS in need. Not look for a cure or bullshit like that, but putting the money where it really will make a difference in the here and now.

Second, I would require Mr. Bucknum to receive a monthly infusion of Tysabri for the rest of his natural life. Whatever would be left of it after being on this dangerous medication. And hopefully he would worry about it constantly.

Judge Judy has nothing on me.

The Slogan

The Tysabri web site has a banner slogan that says “CELEBRATING 2 YEARS OF HOPE.” I think the subtext, in such small print you can only read it if you are an officer of the company, says “…hope that none of these losers dies before we can maximize our profits. Ha ha ha!”

Tysabri is a medicine of last resort for people like me, who just kept getting sicker on other MS medicines.

It enrages me that these people are making a [probably illegal] profit while every month I have to weigh the possibility of a quick horrible death from PML against a slow horrible death from MS.

The MS Society has a political action committee, but it won’t touch something like this because they are in bed with all the drug manufacturers.

What I want to do is inform as many people as possible. Maybe I can put some heat on Biogen, the greedy little dicks. Maybe by the world knowing what scum they are it will hit them where their only interest is: in their bank accounts.

The Future

There are twelve suspected cases of PML now. There were three the last time. It is a known risk because Tysabri makes the blood/brain barrier more permeable, increasing the chances of opportunistic infections like PML. Not to be melodramatic (oh, hell, ok, I’ll be melodramatic; let’s be real, there’s nothing I like better!) but that is what most people with MS die from, opportunistic infections. Pneumonias because we can’t clear our lungs, septicemia from pressure ulcers because we can’t move around or feel our skin breaking down, kidney damage from all the IV Solumedrol, stuff like that. Tysabri is an immunosuppressant, so I am at risk for all kinds of ick that normally would be no issue at all.

You may have read that MS is not fatal. But I think a fatal condition that I develop because I have MS definitely qualifies MS as the cause of death.

Not that I’ve done a lot of thinking about it or anything. lol

I will stay on Tysabri as long as I can. Or, as my neurologist put it, “Until something better comes along.” But every month I get that sliver of fear, is this the time when I am going to get struck by this lightning?

The makers of Tysabri obviously have the same concern, but for a far different reason.

Saturday, August 2, 2008

Has This Ever Happened to You?

(I have a few posts that I wrote in February and March but never posted because of my accident. So I am going to post them over the next week or so, just so they don’t go to waste. :) )

Has this ever happened to you?

You go into New York for a job interview wearing a good pants suit.

The interview process takes hours. The only good thing about the day is you get to have a cup of tea with your dear friend Michael who works a few buildings away from your interview.

On the ferry home, you put your sunglasses on and you put your BRAND NEW glasses into your pants pocket because they don’t fit into your teeny little, yet very fashionable, purse.

You get home exhausted, cold and having to pee so bad you’re unbuttoning your pants as you walk through the door and you let them literally just drop off to the floor before you even get into the bathroom.

You quickly jump into your sweats, then hang up your jacket and pants.

You just as quickly crawl under your comforter and sleep for two hours.

You wake up at seven and realize you have to go pick up a prescription.

It is dark, so you start looking for your BRAND NEW glasses.

You search all over. No glasses.

A light bulb goes on and you go to your pants suit pocket.

You remove your mangled glasses.

You remember when the pants dropped off, you had to step on them to extricate your feet, apparently stepping on your you-know-what- kind of glasses.

You say “Ohhhhhhh nnnnnnooo” like Ralphie in A Christmas Story.

You gamely get out your little glasses repair kit and attempt to bend and screw them back together.

Your MS-numb hand slips with the little mini-screw driver and you gouge one of the lenses.

You get them back together, but they certainly no longer look BRAND NEW.

Has this ever happened to you?

I thought so. I figured it could only happen to me.