Hey, Evin and Kevin. It's time to stop your self-promotion campaign against Pete Townshend

Two individual's are trying to prevent The Who from playing at the Superbowl, claiming Pete Townshend was never cleared of charges in 2003 regarding paying for a viewing a child pornography site. In fact, he was never charged. Read about the facts here.

"After four months of investigation by officers from Scotland Yard's child protection group, it was established that Mr Townshend was not in possession of any downloaded child abuse images. He has fully co-operated with the investigation."
-Scotland Yard statement

Pete Townshend's case was resolved in 2003. He's been honored by VH-1, The Kennedy Center and toured the US at least three times since then. I want these two guys to stop their self-promotion campaign at the expense of Pete. Kudos to David Whitley at the NFL Fanhouse for getting it right.http://nfl.fanhouse.com/2009/12/29/who-are-you-to-ban-townshend-from-super-bowl/?synd=1

Meanwhile, London Council to commemorate Townshend.

See you at the Superbowl, Pete!

The full picture from our Christmas card - I couldn't get it to fit on the ones I had printed.

My kooky little Christmas hat

I bought it today at the grocery store. I put it on while I was shopping. Something about it made everyone stop and talk to me.

I think I've finished all my holiday shopping. This year has been the best I have ever felt at Christmas. Ever. Usually I am just so fatigued, depressed and miserable. I haven't even used my light box yet this year, and we're already to the midway point. LDN and MS-Diet, I'm looking at you. I'm very grateful to feel good. I spent a little too much this year, but I'm enjoying it all so much more than I ever have. Thanks, Santa :-)

I went to a Hat Brunch today. Seriously.

It was fun.

Patients Like Me, or not

A few years ago I, like many other people with chronic diseases, was asked to join a site called "Patients Like Me". I joined it and put in all my data about me and MS. It was a lot of information. I thought that it might be interesting to be part of community around MS. I have thought this in the past and tried various forums and boards and have invariably gotten turned off and left. MS is funny - there are just such evangelical points of view on treatments. I get tired of reading all the posturing and crabbiness and just drop out.

I'm also not a huge fan of drama, and I have developed a very bad attitude towards those who embrace the drama of their disease. I try to have compassion but fail a lot of the time. I would guess this is because, for the most part, I don't allow myself to dwell in the drama of MS. Not for very long, anyway. I used to in the beginning - I was quite scared, and I didn't know enough. I've learned a lot. And I do tolerate it in, and have compassion for, the newly diagnosed. I will keep working to be more tolerant of others (I don't have high hopes).

I kept up with the "Patients" site for a few months. I thought it was going to be cool, in the beginning. I got a few "I'm thinking about Tysabri" questions from people, which is fine. But I didn't feel like there was much benefit, nor that I was being very useful.

I have a Google alert set up for Tysabri. I was reading through the email this morning and it had picked up a press release from the "Patients Like Me" site, from about a year ago. It was a report on how Tysabri patients viewed the news about the recent (at the time) new cases of PML. To me, it read like a pharmaceutical advertisement. Sort of a "hey, everything's fine!" And, sure, maybe everything was fine, but is seemed pretty one-sided. It got me wondering - who funds "Patients Like Me"? Since it was 7 am on a Saturday morning and I don't have anywhere to be for a few hours, I decided to follow up.

I read through their corporate FAQ. I think they started out with very good intentions. They are brothers or friends of a young guy who was diagnosed with ALS. They saw him go through his disease, and decided to start a site that would provide community for people with 'life-changing illnesses'. Well, I feel for them there. ALS is probably the worst disease process someone can go through. I appreciate their intention around community. Here's the blurb on how they are funded:

"How does PatientsLikeMe make money?

We take the information patients share about their experience with the disease, and sell it in a blinded, aggregated and individual format to our partners (i.e., companies that are developing or selling products to patients). These products may include drugs, devices, equipment, insurance, and medical services. We do not rent, sell or share personally identifiable information for marketing purposes or without explicit consent. Because we believe in transparency, we tell our members exactly what we do and do not do with their data.

By selling this data and engaging our partners in conversations about patient needs, we're helping them better understand the real world medical value of their products so they can improve them. We are also helping companies accelerate the development of new solutions for patients. Our end goal is improved patient care and quality of life. "

I hear them say they are transparent - I guess I was a little naive and never thought to read their FAQs. I guess it's fine that they sell their data. I don't think they go out of their way to tell you that, though. And I don't care what the original intention was - selling my data changes the agenda you have with me. My main issue is that I haven't updated my data in quite a while. So my data does not tell the full story. The data is very quantitative, not qualitative. I don't think they could possibly explain to any company how I feel about anything, and I'm skeptical about how rigorous the data-gathering process is. Whatever they are providing to companies is anecdotal at best, from my amateur sociologist point of view.

The bottom line for me is, I really, really, really don't want to part of something that is helping pharmaceutical companies with misguided PR. I felt a little burned by the obfuscation of the "Tysabri truth", ie, that the odds of developing PML are radically different for people on Tysabri for long periods of time (1 in 600) than they were stated right after the trials (1 in 1000). But I never heard that from Biogen. I read it in the Wall Street Journal. Biogen stopped reporting new cases of PML many months ago - the bad PR affects their stock, you see. And I know Biogen has my phone number - they called me one week after I had missed my last scheduled infusion to find out if I need anything. I bet they were mostly concerned about the missing $7,500 that month.

I wrote to 'Patients" and asked them to remove all my data from their database, and close my account. I don't like being part of, well, bullshit pharmaceutical research. I'm also very aware of the danger of my life becoming the MS. Every few years, I go through a research cycle to decide what my next move is, in terms of treatments. That's ok - I've been in one for a few months now. But I don't want to be living a life about MS. I want to live my life in spite of MS. When I'm having an episode, then yeah, I'm living IN my MS. But when I'm not, I need to deal with the deterioration I've had, but not dwell in it.

This morning I bailed out of the "Patients" site, and I also stopped my Tysabri alert. I'm not on it anymore, I don't need it in my face every day. I will keep reading about LDN, since I'm on it, and keep an eye out for what the mainstream neurologists are doing. My attitude towards the mainstream MS stuff, though, has really soured. The biggest improvements I've seen in my day-to-day life have been from following the MS-Diet, taking a well-thought out & guided-by-a-professional supplement program, and now, LDN. My mainstream neurologists never told me about any of those things.

And I'm fond of Tysabri - I think Tysabri did a great job stopping the plaque progression in my brain, and in the beginning gave me a energy boost for a few weeks after the infusion. But I had one of my worst episodes while I was on it, and I still struggled with fatigue and energy. But two years+ was enough. I still have my cognitive issues, my bladder issues,my balance issues and occasional sensory things. I feel lucky that during those two years, I found the diet and my 'other', more holistic, neurologist. And I've noticed a huge difference in my energy since LDN. Tysabri didn't do this for me. LDN costs me $30 a month. Maybe that's why no one promotes it. My mainstream neuros laugh at me. But you know, I'm doing as well as or better than anyone else I run into who's been diagnosed as long as I've been. So while they are laughing, I'm going to keep doing what I'm doing.

In a few days, we will be making the gluten-free, Christmas treats. Woo!

All the cookies we made. Halloween cookies aren't just for Halloween anymore. Their dialog balloons!

Gingerbread Mr. Bill - Ho Ho Hooooooonoooo!,

Adrian's A

The extremely hard to find "Ho Ho Ho" Dialog Balloon Cookie"!

The rarely seen half-gingerbread-guy-half-angel hybrid!

Shmushing, shaping and cutting

Gingerbread cookies with Adrian

We Have Got to Get it Together

Call out the instigators
Because there's something in the air
We've got to get together sooner or later
Because the revolution's here, and you know it's right
And you know that it's right
We have got to get it together
We have got to get it together now...-Thunderclap Newman (Jimmy Keene). Produced by Pete Townshend :-) Once I saw Wilco do it during a soundcheck!

That 'get it together' thing is echoing in my brain.

I realizing I'm too strung out at the moment. Been working far more than I'm supposed to, stepped in to help with a few things musically at my church, have a kid who's pretty high maintenance this year, lost our longtime babysitter and housekeeper a few months ago, have a husband who's been far less than 100% due to a broken bone and bad cholesterol meds, and have been less than whatever my normal MS-y % is due to my new drug and it's fatal flaw - insomnia. Ok, fatal is too strong of word. Now, Tysabri....that had a fatal flaw. LDN just has a near dealbreaker.

And, it's Wednesday night and I haven't yet watched episode 2 of "Men of A Certain Age" yet. Someone else is always watching something in the evening. I'm not going to take my LDN pill tonight. I'd like to see if I sleep better. I may have to take it more sporadically. I was taking heavy-duty melatonin but my doc wants me to lay off of it. She doesn't feel it's good for immune system issues.

Today was just a frustrating day in a lot of ways. Starting again tomorrow! "You Can Do It!!"

They Had Me at "Good Morning, This is Your 6 Am Wake Up Call"

"I'm changing, arranging, I'm changing..I'm changing.....everything." - "Reflections of My Life", Marmalade.

Tonight I read a blog post my husband wrote about how I am now a football widow. I told him it's cool because I don't need him for the rest of football season anyway - I've got "Men of a Certain Age" now.

As soon as I starting hearing about this show, I knew I was going to watch it. I watched the pilot tonight, and yep, I'm in for the season. I could tell from the very first shot of Ray's face, recently separated, lying in bed in a hotel room at 6 am, looking slightly unsure and anxious. Unlike some, I am a big Ray Romano fan. I grew up with his ilk in NY/NJ. I adore him. Hell, I married a Long Island boy - I like the genre. I always knew he had something like this in him.

A few scenes later, he's in the car listening to music, and the song he is playing is "Reflections of My Life", by the band Marmalade. My heart stopped for a fraction of a second. I momentarily turned into that guy on Seinfeld who can't talk when "Desperado" plays. "Shh! Elaine, this is my song."

That Marmalade song has haunted me since I heard it the first time, c. 1969. I forgot about it for a while until I went to college. Then it popped into my head one day when I was feeling particular miserable. (Alvy Singer, in "Annie Hall": "I feel that life is divided into the horrible and the miserable. That's the two categories. The horrible are like, I don't know, terminal cases, you know, and blind people, crippled. I don't know how they get through life. It's amazing to me. And the miserable is everyone else. So you should be thankful that you're miserable, because that's very lucky, to be miserable.") I searched the record stores in Athens, Georgia until I found it, and played the shit out of it - for months!! It just resonated with me, before I even could possibly know why.

I completely fell for Ray's character Joe at that moment, flawed as he seems to be. I kept wondering - is there any way that Ray could have actually modeled the character after me? Painful marriage issues, awkward moments in the car with a teenage daughter, tween-aged son in the backseat playing PSP, destructive addictive tendencies....what's not to love?

I get that there are two other popular and respected actors in the show, but I don't care about them :-) I know, I am supposed to love Scott Bakula! I just never have. But Andre "I'm forty-eight. I'm forty-mother-shit-eight!" Braugher was pretty damn good. I didn't know we were allowed to swear on TBS, either!

So, man, they dug up the band Marmalade for the pilot? I can't wait to find out what else is in store, musically and otherwise.

You Can Do It!!

http://www.youtube.com/watch?v=VZ2HcRl4wSk&NR=1

Yes, I secretly love Adam Sandler and Rob Schneider.

I watched the movie "Funny People" last weekend, which is a Judd Apatow film starring Adam Sandler and Seth Rogen. I loved it. It was wrongly marketed as the more typical Apatow boys club-gross-out-comedy film. It's more serious than those usually are, and Sandler gives a fantastic performance as the cranky and relationship-challenged George Simmons. Simmons is a wildly successful comedian who has made popular films and done stand-up. When we meet him, he receives some life-altering news. He starts to have to question his life and his choices. I don't know who the character is modeled after - I felt like perhaps George Carlin, if Carlin had made a lot of Adam Sandler type films (featuring such classics as "Merman" and "Sayonara, Davey!!"). Possibly Eddie Murphy? I don't think it's really modeled after Adam, though. George Simmons gives off a different level of success than Adam's had, to me.

The movie is an interesting combination of pain and laughter. The fun part is the relationships between the characters in the film - all comedians, some more successful than others. Jason Schwartzman rocks as a not-that-funny-sitcom-actor-in-an-equally-bad-sitcom. His show is called "Yo, Teach!!". That alone makes me laugh. It's a combination of 'Welcome Back, Kotter" and that one show that I never watched....something about the bell. Oh - "Saved By The Bell". There are plenty of show-within-the-show thing to give us a glimpse of all the work that these characters do. They even made some web sites for the characters. I feel like Apatow is calling out some of his buddies, and himself, on some of their bullshit. It's kind of a labor of love, and I think it was pretty personal for Apatow. It gave me even more respect for Sandler than I'd had before. I always like him, even when he was acting like an idiot. I confess that love his music act. Yep. Yesterday's meatloaf is today's sloppy joe...

Comedy is one of my passions and hobbies. I think this film is made for someone like me. I did a presentation once at an ASA conference (American Sociological Association) on comedians. I had done a qualitative study of them while I was a grad student in sociology at the University of Chicago. So I am, by nature, just fascinated by watching comedians. Apatow includes many of the things I wrote about in my paper - the hierarchy of what is considered 'good' material, the intellectualizing of the comedy (as evidenced by one comedian watching another do a funny bit, but not laughing, and instead saying "That's funny."). It's all there.

I've often wondered why I feel such a very strong affinity with comedians. I suppose it is because early on I dealt with my own pain through being funny. It's how I survived. The cause of the pain has varied over the years - early on it was being fat. Then dealing with an intolerable chronic depression. Then it was graduate school. That was so painful, I had to take improv classes at Second City. At the time I was doing my paper for the ASA, I was hanging out with comedians, performing the Harold* with them, dating them. Mainly, I wanted to be them. Then my life moved on, and it was about having babies, being married, being separated, having more babies - the stuff we all do. Later it was MS and losing my cognitive skills, my bladder control and using a cane. Finding and losing Tysabri, finding LDN. Comedy made it all temporarily "ok". I've really idolized certain comedians who have made that into an art.

I continue plodding and waltzing through life, finding the humor in everything. I thank the universe for coming up with humor. I cannot imagine my life without it.

*"The Harold" is not a sex act, but a longer-form improv format. I swear - look it up! And let's be thankful for Del Close while we're at it.

Thanksgiving at our house

First day of LDN for MS, 2 months since my last Tysabri

I took a small dose of LDN last night. I slept ok but not great. Woke up a few times. I felt great when I woke up at 6 am. Better than I have in a while. No anxiety - I usually wake up with craploads of anxiety. Around 11 or so, I felt a bit of a crash, and then again around 3:00. More so than what usually happens to me in the afternoon.

I read Julie S.'s blog before I started, thanks to CC. That's helped me with my expectations. I don't know if I have any. I didn't with Tysabri. I hope that I can find some stability on it, and have more good days than bad. Given how much I've improved with the MS-Diet, I think it's a reasonable hope.

I saw Andrea Cohen yesterday - she's my holistic neurologist. Is it ok for me to say that I love her? I love her. She listens to me and hears me in a way that my more mainstreams neuro's don't seem to be able to. I was laughed out of town by them for even mentioned LDN - twice. Andrea wrote me a prescription. We went over all the supplements I'm taking, adding one and increasing a few others.

We also talked about the diet and she encouraged me to try going back on legumes with the appropriate enzymes on hand (well actually stomach), and, while continuing to avoid casein and gluten, trying non-cow cheeses, such as buffalo and goat. I'm all over the legume idea. I would be very, very happy to include them back into my diet. I was a vegetarian for years and years until I went on the MS-Diet. I had to start eating turkey, salmon and occasional chicken so I could get enough protein.

I will think about the non-cow cheese thing.

Andrea is so nurturing - I left feeling like everything was going to be ok somehow. I had a lot of inspirations about what my "Plan B" (post-Tysabri) will include.

I think I might have also switched my neurologists. around. Andrea used to be my "other" neuro. I think she might have become my main man. I need to keep a good relationship with the other guys, to get MRI's and bloodwork and all that. But my day-to-day life has improved so much since I've worked with Andrea, so I think my Plan B is going to revolve around her approach. I think I'm going to skip the steroids and the Rituxan, for now.

I drove a (also gluten-free) friend down to Colorado Springs today and we stopped by "Outside the Breadbox", a gluten-free bakery. WOW, that was fun. My local health food store stocks some of their stuff, but they have a whole bunch more that I had not seen. We were both like kids in a candy store. Plus we hit them on a sale day! It was a beautiful day in Colorado, today. And I've got GF, DF pizza crust waiting for dinner :-)