Blog Awards

Robert Wilensky is a distinguished professor of subjects so complicated I have no idea how to even describe them. At any rate, he is well known for the quote, "We've all heard that a million monkeys banging on a million typewriters will eventually reproduce the entire works of Shakespeare. Now, thanks to the Internet, we know this is not true."

We have all seen unreadable schlock out there. But what blows me away is the fact that if you wade through the bad, you will find absolute gems.

One such gem is my friend Marc’s blog Wheelchair Kamikaze. Marc is funny, erudite and a visual artist, as demonstrated by his photography. Marc also has Primary Progressive MS, which has worn him down physically and emotionally. PPMS is a more debilitating and more advanced stage of MS. Through all his challenges, he’s a mensch and I just love him and his wonderful, wonderful wife.

I would strongly urge you to take a peek at Marc’s blog for sheer pleasure. He is witty and poignant and some of his Wheelchair Kamikaze death-defying films are hilarious.

Marc’s blog has also been nominated for an award as the Best Patient Weblog of 2009, sponsored by Medgadget.com. This award is prestigious and an honor, so I would love to see him win. He deserves it for the general excellence of his blog content, the writing, photography and films.

Voting can be done at this link:

Voting

If you scroll down you will find the category.

All the nominated weblogs look great, but I do have a few personal favorites.

The Blog That at Manhattan by Dr. Peggy is a fun site that combines both wry and serious observations about food, life in New York City and the practice of medicine. Her recipes are amazing. And, through her posts and comments, she strikes me to be a great doctor.

Musings of a Distractible Mind is a great blog I recently discovered. The author, Dr. Rob, is very, very funny. But he can be serious as well and provides a wealth of information about working with your doctor. I love Dr. Rob! He picked my blog post as his favorite in a recent Grand Rounds. What could be not to love? Sigh.

Unfortunately, Dr. Peggy and Dr. Rob are positioned against each other in the category of Best Medical Weblog. I don’t know how people can decide. They are both awesome.

And finally there is the gentle and sometimes harrowing blog of an Emergency Room physician. His words positively glow off the page when he talks about his family, especially his late mother. It is beautiful. He is also a compassionate physician who displays nothing but respect for his patients, even the most difficult ones. I know he would be thrilled to find StorytellERdoc (he is under best Literary Medical Weblog.) a winner.

Thanks if you vote and thanks any way if you even think about voting. The polls are open until February 14. You don’t have to go anywhere, you can vote right in your pj’s at your computer.

I want to say may the best blog win, but since they are all great that is just too hard. But DO vote for Wheelchair Kamikaze if you can, because he is my dear friend and a brilliant thinker.

Whooops

I owe my readers an apology. It seems I have been inadvertently scaring the pants off of people, or just plain irritating them, by blasting Bruce Springsteen singing Born to Run.

When we went to his last concert in October, I did this fun slide show of our pictures, backed it up with Born to Run and posted it. I loved watching it, because I relived what a blast that night was each time.

Unfortunately, for many people, the music bursts out with no warning within a few seconds of pulling up my blog. SO obnoxious!!! It was supposed to only play if you clicked on it. My friend Christine told me it scared the bejesus out of her every time she went on. But I didn’t believe her. I mean I thought it was just a quirk in her computer.

Then I received a lovely, complimentary e-mail from a reader. At the end she graciously asks if she could adjust the music I have behind my blog.

But I don’t have any music behind my…uh oh.

So I apologize for being a blogger with bad manners, even though it wasn’t intended. I changed the slideshow into a link, so that should solve the problem (although it really is worth watching). Thanks for sticking with me even though I innocently broke the rules and annoyed the hell out of you.




Even Bruce agrees.

Grand Rounds

Grand Rounds is a weekly compilation of the best medical blogs. It is hosted by a different person each week, and they usually organize the submissions into some kind of theme. It is read by thousands of healthcare professionals and patients across the country.

This week’s Grand Rounds is hosted by the irrepressible Dr. Rob, a primary care physician, who writes Musings of a Distractible Mind. His blog reveals him to be a compassionate, funny doctor who takes his work very seriously.

Now Grand Rounds are hardly what you would call dour, but they usually are pretty staid. Enter Dr. Rob, on Groundhog’s Day, and you have one of the funniest things I have read in a long time. And that is not sucking up. Because Dr. Rob already chose my blog post about Jacqueline du Pré as his favorite for this week!!!!!! AAAGGGHHH!!!!!

He likes me. He really likes me.

I am completely flattered and totally blown away. What means the most to me is that here is a doctor who gets it. He has empathy for his patient’s pain. What a gift that is.

I asked him to marry me, but I haven’t heard back yet.

So, thanks Dr.Rob!

Here is this week's Grand Rounds. There is some wonderful reading there:

Musings of a Distractible Mind

Kate McGarrigle

I know it's been a few weeks, but I am sitting here listening to the McGarrigle's and just feeling so sad at her loss. And feeling so bad for her family. Rufus posted beautiful things about his mother on his website. It made me cry.

I actually think her memorial service is today.

I have loved the McGarrigle Sisters since I first heard them in 1975, when I was 21. Kate's death makes me feel so old and mortal, instead of the way I felt at 21, invincible, with thousands of years ahead of me.



For e-mail readers:

http://www.youtube.com/watch?v=2fcBEGjK3cM

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.

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.

Bingo.

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.

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: http://www.youtube.com/watch?v=L5C99JyP2ns)

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: http://www.youtube.com/watch?v=TpN41toUv-w )