Friday, January 29, 2010

The Brush Off

When Dr. Wonderful recommended a pain management doctor, I was eager to take advantage of another specialist, a part of a team. I felt hopeful, especially after I researched the different modalities used to treat pain caused by the kind of spinal cord damage that I have.

It is time consuming and exhausting to get to multiple doctor appointments. It is stressful going to someone new. But Dr. W. had said this guy was the best and ‘a good listener’, so I envisioned a consult where I would tell him my history, we would discuss all my options and he would be a guide for my best choices.

The office is sumptuous in a tacky way and very smoothly operated. A tech, who spoke so quickly I didn’t understand a word she said, took my vitals. A Physicians’ Assistant came in and asked where my pain usually was. She did a half-baked neuro assessment and looked at the MRI films I brought with me. She examined them with a furrowed brow and I suspected she had no idea what she was looking at. I pulled up another film. “Do you want the sagittal or the medial view?” heh heh I was proud of that.

She said what she put up, a side view of my cervical spine, was plenty. Then she said the doctor would be right in.

He did appear after a few minutes. I was sitting on the examining table, as I had been told to. He stood on the other side of the room leaning against a cabinet, reading some notes. He asked where my pain was. He frowned and said, “This problem is neurological, there is nothing I can do for it. I will give you Lyrica and you come back in 4 weeks.” He made for the door. I thought of my research and said “But don’t you treat people with pain from Transverse Myelitis?” “No” he said, “call your neurologist, that is who should take care of that. The Lyrica will help.”

And he was gone.

He never examined me, never even came near me, didn’t ask my history, barely even asked me a question, never mind was a good listener. He literally was in the room for less than three minutes.

I sat there for a second, simply stunned. I had thought I would be leaving full of hope at the possibility of a reduction of my constant pain in the future. Instead, I got the bum’s rush. I was so upset I was literally breathless. By the time I got to the car I was crying. What the heck just happened? Where was the ‘team approach’? This doctor could not have been less interested in me. The visit was a complete waste of time.

I guess there are other pain specialists out there. But when you are sick, chasing down good care, finding someone who is not like Dr. You’re Boring Me, is utterly demoralizing. You get labeled as demanding or difficult when you hold someone to high standards, even though everyone should.

Some people think I am brave, but really I’m not. I’m a miserable coward. The likelihood of having intractable pain for the rest of my life leaves me reeling. The idea that a physician who treats pain would be so indifferent and dismissive is infuriating, beyond frustrating. The prospect of having to fight to get what I need is overwhelming.

I don’t know how he is going to bill my insurance company when he never did anything. I don’t know how I am going to handle this, if I will bother letting him know how upset I am. I do know I am furious that I was dismissed the way I was, especially after the research I did. I know there is treatment out there and I am going to find it.

But first I need a lie down. And then maybe an entire peanut butter cream pie from Wegman’s. Washed down with vodka. Lyrica-schmyrica.

I feel better already.


Friday, January 22, 2010

Hang on to your hats...

I'm on The Juice.

I have been dragging for months and feeling like death on toast.

(Like Death on Toast, a Play after Pirandello in One Act:

Marie: Waiter, I would like some toast please, with marmalade.
Waiter: I’m sorry madam, we’re all out of marmalade, we only have Death.
Marie: But I don’t care for Death on Toast.
Waiter: I’m sorry madam.
Marie: I really, really don’t like it.
Waiter: I am very sorry madam, it’s all we have.
Marie: (pouting) I hate Death on Toast.
Waiter: If I may be so bold madam, perhaps if you had not done something terribly wrong in a previous life, we would not be out of marmalade.
Marie: It is all my fault, isn’t it?
Waiter: I’m sorry madam, yes, it is.
Marie: Waiter, I would like some toast please, with Death.

The End )

My broken shoulder has been agony despite three surgeries to try to get rid of the pain. When I tell you I was ready to tell my ortho to just amputate, I am not kidding.

Last week Chris, my PT extraordinaire, had an epiphany and said "maybe your arm pain is referred pain from your neck?".

And I innocently said, well, the Transverse Myelitis caused a large lesion on my cervical spine.


Chris and I looked at each other. It was time for the steroids I hate so much and had put off for so long.

I called my neurologist and told his secretary I thought I could use a course of solumedrol. Dr.H is so awesome. He totally respects my assessments. No questions asked, it was ordered.

At any rate, the visiting nurse came Wednesday and started my IV. I did the first infusion. And within hours I started to feel unbelievably better. The sensation of having been pummeled all over began to fade. My legs and knees, which were so weak and painful that yesterday I was using a walker, grew stronger and steadier as the day progressed. But the best: my arm and shoulder pain, which has been unceasing for almost two solid years, through three surgeries, has gradually eased until I am absolutely comfortable tonight.

Everybody has different experiences with IV steroids. Sometimes the side effects are simply intolerable. They have the potential to do incredible cumulative damage to your body. I have found that they aren’t always effective. Last time it wasn't at all. So I am very careful about choosing it as an option. This is my fifth course in five years, but the last one was a year and a half ago. I figured that was a long enough break. I was desperate this time.

When I went to see Dr. Wonderful for a surgery follow up on Tuesday, I was trying so hard through the whole visit not to cry. My arm is completely healed from an orthopedic standpoint, he told me. There is no reason for the pain, bone wise. And in my head I am thinking “omg omg omg what am I going to do?!?!” Fortunately, he wasn’t throwing up his hands. He is wonderful. He carefully read the PT report about the neck lesion and thought the theory had a lot of credibility. “That’s where all the nerve bundles originate.” He referred me to a pain management specialist. He said “We’ll treat this as a team.” Dr. H.’s secretary is faxing over as much info about the spinal cord damage to the pain guy as she has. What more can I ask for?

While Dr. Wonderful was writing prescriptions, I had nothing to look at but either him or the floor. Of course, given that I have the maturity of a ten year old, through blinking away my tears, it certainly doesn’t hurt that he is cute as a button and dresses impeccably. I was mesmerized by his gorgeous socks and idly wondered if he threw them out after each wearing. Because nothing that pristine could come out of the washing machine. Were they silk? Did his wife wash them by hand? Good thing he wrote fast, who knows where else my mind could have wandered.

By the way, now that you know about his socks, I have permission to use his real name. For the past almost two years I received the most incredibly optimistic, compassionate and skilled care from Dr. Brian Torpey of Tinton Falls, NJ. His real name is Dr. Torpey, but he will always be Dr. Wonderful to me.

So after two days of Solumedrol I have slept a total of five hours. By tomorrow I will be a perpetual motion machine. I will not be able to stop talking, or writing, as you can see already by the length of this post. I am walking without a cane. Nothing hurts. Yesterday I got washed, dressed, made up and was out the door with a cup of tea to Physical Therapy in twenty minutes flat. On Tuesday it took me almost twenty minutes just to wash my hair in the shower.

Unfortunately, next week I could crash and burn. But for these few days I am giddy with the sensation of normalcy.


Sunday, January 17, 2010

Jackie's Month

Not many people love January. It’s unpredictable, it’s cold, it’s blah.

For me, since I found out I had MS, January has been Jackie’s Month.

Jacqueline du Pré was born in January 1945 to a musical family, but of all of them, she was special. She was a genius as a cello player, a prodigy. Her passion and unique style raised eyebrows but made classical music cool in the late sixties.

Here is Jackie playing Elgar, conducted by Daniel Barenboim, who was her husband. It is magical.

(for e-mail readers:

She found out she had MS around 1970, when she was 25. By the time she was 28, she could not play anymore. That fervor, the contagious delight of making music and the excitement she generated doing it was done. She died when she was 42.

Where she was:

Where she went and where I’m going:

I am excruciatingly aware there are other bad things that happen to people. Because they’ve happened to me as well. I lost an eye in an accident at 4. I had to have my shoulder replaced because of a fall. There are other terrible diseases out there.

So I say this for all of us. Life is like a tunnel. There is before diagnosis, behind us, where there was some light. And then there is after, ahead of us, dark and unknown. It is the unknown, along with the daily struggle to dress and walk and bathe, that causes a howl of injustice inside your head. A shriek of grief so primal, you can never let it out.

This clip from the film about Jackie and her sister portrays it perfectly. She looks down the tunnel of her room, staring into her past life, represented by the dress, which further taunts by moving effortlessly. This few minutes of film captures what it feels like every time you remember once again you have Multiple Sclerosis.

(For e-mail readers: )


Saturday, January 9, 2010


Boo Hoo Me

Since the demise of my laptop it has been awfully hard to type on my desktop. Don’t get me wrong, I am endlessly grateful for the fact I have a back up computer. But there is something about the angle, the height of the desk, something, that just causes my operated arm to ache terribly after only a few minutes.

It limits the time I spend online, so I have not been writing, or corresponding, as I should be. I will be rectifying that before too long by either a repair or replacement, but I have not been up to getting that taken care of.

MS has been kicking my butt for the past few weeks. I suppose the stress of the surgery combined with the holiday, it just ramped everything into high gear. The exhaustion, even after doing absolutely nothing, is astonishing. I have had to cancel long looked forward to plans at the last minute several times because I could barely contemplate mustering the strength to brush my teeth, never mind get dressed.

New Readers

I was thrilled to discover I had new readers this month who actually left comments. Unfortunately, they were Asian pornographers. Not that there's anything wrong with that. But I didn't think they were a particularly good fit with the rest of you. So I did delete their comments. If I am wrong and you guys would love some nice explicit Asian porn on my blog, just let me know. I can always reconsider.

No Christmas Miracle

Last Sunday afternoon I eyeballed my now useless laptop and thought “Maybe I could fix it?”

(Kindly reserve all laughter until the end.)

People fix computers. I am a people. Ergo, I can fix computers.

So I got my beading tool kit with the teeny tiny screwdrivers. I asked my beloved Grandma to be with me in spirit, because I know she knew how important my laptop was to my career and my writing. I put on a CD of Celtic Christmas Carols, you know, to get that ethnic support thing going. I ate a tootsie roll, for strength. And I got to work.

At the start, I was fully aware that anyone who was murmuring ‘righty tighty, lefty loosey’ as they unscrew teeny little screws has no business opening up an expensive electronic appliance. This did not stop me.

I opened everything carefully, stared at the contents in awe, blew away some dust and said a prayer. I put everything back together, confident I had performed a marvel.

Alas, it was not to be. And I always hated those freaking bagpipe Christmas Carols.

Christmas and New Year

All my children and my precious grandson came together to celebrate Christmas Eve at my house. I love them all so much. They are funny and smart and truly good people.

I grew up in New York City and my childhood Christmas memories revolve around the city. It was a ritual to visit my father’s Fifth Avenue office at Christmas time. I would be in my holiday finery of a crinoline stuffed dress, a wool coat with a velvet collar, usually leggings to match and a white fur muff that hung around my neck on a satin string. Patent leather Mary Janes and white tights completed the outfit. Hideously uncomfortable yet adorable. Just the way I eventually tortured my own children.

After being paraded through the offices, we would walk the few blocks down to Rockefeller Center. I would gape at Atlas holding the world, which for some reason always fascinated me. The lights on Saks always enthralled me too, and then, there they were, the familiar welcoming, trumpeting angels that preceded the tree.

I never remember eating dinner, although I suppose we did. Because next on the agenda was the Christmas show at Radio City. We always went in a private entrance because…I have no idea why. My grandfather was a popular police lieutenant in that precinct and I think that had something to do with it, he must have gotten VIP tickets. When we were dating and my husband once said something about the long lines to get into Radio City I had no idea what he was talking about. We would go in a side door and up an elevator that I remember was lined with tufted, wine colored velvet. I guess I was a little bit spoiled.

(This picture is Rockefeller Center in 1955, when I was a year old)

Moving Forward

I want to say I have been under the weather, but for me that actually means under the covers in a major funk. And who wants to hear about that?!?!

While wallowing in misery is just about one of my favorite occupations, I do occasionally make half-hearted attempts to raise my self-pitying spirits.

There is therapy of course, where my beloved therapist offers me a million tools that I promptly forget the minute I walk out the door and revert to my one of my other favorite occupations, self loathing.

I also listen to meditation and affirmation CD’s. I know, I know, images of Stuart Smalley. So what’s so wrong with that? They actually are helpful, if slightly comical. (And by the way, if you have never seen Stuart Saves His Family, do yourself a favor, it is hysterical, especially for anyone who grew up in a dysfunctional household and/or has any familiarity with twelve step programs.)

My favorite inspirational CD’s are by Belleruth Naperstak. I really like her guided imagery but I love the affirmations.

These are the ones that speak to me the most:

Regarding my own strength:

I salute my ability to survive and my courage to heal in spite of what I have experienced.

I understand that there are treasures waiting to be discovered in the anguish of my past.

I know that I have things to do, gifts to give, purposes to accomplish that require my full strength and courage and peace of mind to do this.

Regarding obtaining strength from the people in my life, past and present:

I am aware that I am surrounded by a protective cushion of all the kindness, tender thoughts, good wishes, prayers, gentle smiles and sweet gestures that have ever been sent my way.

The most comforting of all:

I know that I am held in the hands of God and I am perfectly, utterly safe.

Happy New Year everyone!! I’ve missed you!

To leave you with a smile, here is the original trailer from Stuart Saves His Family. The cheapskates have not allowed any clips onto You Tube.