These Pretzels Are Making Me Thirsty

Nick Kristof is who I was supposed to be

2011-12-04T15:08:00.001-07:00

Growing up, I thought I was going to be more like Nicholas Kristof. I started out well - was an overnight volunteer every week at a homeless shelter; joined the VISTA program in the US for two years; set off to study sociology and change the world. I don't think I changed the world as much as the world changed me. (I don't know if that is true, but it is a pretty good line.) I have great admiration for Kristof. He's watching out for the truly needy - and he appears to really live it. So here's his list of gift ideas that help someone in need of something.

Gifts That Say You Care

By NICHOLAS D. KRISTOF

GIVE Grandma a bit of credit! These holidays, would she rather receive a silly reindeer sweater or help a schoolchild acquire glasses to see the blackboard clearly for the first time?

Choosing the perfect holiday gift is one of life’s greater challenges, modestly more difficult than earning a Ph.D. in astrophysics. So it is time for my annual gift guide.

For starters, the Web sites of the major humanitarian organizations offer alluring holiday gifts. Through the International Rescue Committee, $30 buys a flock of chickens for a needy family. At CARE, $29 gets a girl a school uniform. Through Heifer International, you can stock a fish pond for $300. With Mercy Corps, $69 can start a female entrepreneur in the sewing business.

Beyond those organizations, here are some lesser-known charities that may help put a grin on Grandma — and on someone else.

Helen Keller International fights blindness and malnutrition around the world with simple and cost-effective programs. One of the best ways to improve children’s health is to focus on micronutrients, like iodine, vitamin A and zinc — and in some cases to fortify foods with nutrients at a negligible cost. Helen Keller International, athki.org, is a leader in that effort, and gets more bang for the buck than almost any group I can think of.

And those glasses I mentioned for a schoolchild? That’s a Helen Keller International program, ChildSight, which operates in the United States as well as in Indonesia and Vietnam. Schoolchildren are screened for vision problems, and those who need glasses get them. Providing glasses costs just $25 per child — which is a much better value than a sweater that will sit in a drawer for eternity.

Against Malaria has a simple model: $5 will buy a bed net that protects several people from mosquitoes that carry malaria. All the money that is donated goes to buy nets, and Against Malaria, at againstmalaria.com, gets a No. 1 rating and a rave review from GiveWell, which rates charities.

In a malarial area in Cambodia many years ago, I met a grandmother who was looking after several small children after their mother died of malaria. The family had one bed net, and every night the grandmother had to decide which children would sleep under it — and which one she would leave outside.

For the price of a stocking stuffer, you can spare a mother or grandmother that wrenching choice — and potentially save a life.

Reading Is Fundamental is an American program that promotes literacy in high-poverty communities in America. Its government financing has been slashed in the tight budget environment, so it needs support.

The group is a public-private partnership with 400,000 volunteers, bringing huge efficiencies. It provides new, free books to four million children across the United States, and encourages the kids to read. Information is at rif.org.

The Citizens Foundation was started by Pakistani businessmen concerned about their country, and it builds terrific schools for needy children there. We’re seeing American-Pakistani relations spiral downward, and billions of dollars in American military aid to Pakistan haven’t accomplished much. The best way I can see to moderate Pakistan and defeat extremists is to bolster secular education.

When I travel in Pakistan, I see radical madrasas built by Wahhabi Muslim fundamentalists from Saudi Arabia and other countries, offering free meals to entice students. Fundamentalists donate because they understand the power of education to change a country. And we don’t even compete. Information is at thecitizensfoundation.org.

GEMS is a New York-based organization supporting American girls who have been trafficked, prostituted or otherwise sexually abused. It provides shelter and education for those rescued from pimps and provides some of the first nurturing many have received.

GEMS stands for Girls Educational and Mentoring Services. It was founded by Rachel Lloyd, herself a survivor of the streets who went on to earn degrees from Marymount Manhattan College and City College of New York and wrote a searing memoir, “Girls Like Us.”

Prostitution of children should be a stain on the national conscience, and GEMS helps survivors while using peer counseling to prevent the trafficking in the first place. It is at gems-girls.org.

And here’s a special holiday message you can pass on to university students: tell them that I’m announcing my annual win-a-trip contest. In 2012, for the sixth time, I will take a student with me on a reporting trip to the developing world to try to shine a light on neglected issues. These trips have been life-changing for past winners. Information about how to apply is on my blog, nytimes.com/ontheground, and thanks in advance to the Center for Global Development for again helping narrow the applicant pool down to finalists.

Reasons to be Cheerful, Pt. 49

2011-09-29T14:41:00.000-06:00

Or, this is me recovering from the last year.

I'm worried about myself. I'm watching the pilot episode of the show "Louis". It's not making me laugh. Man, I wanted it to. It's like an odd combination of a Seinfeld, Curb Your Enthusiasm, and Ferris Bueller's Day Off. Except that it's not making me laugh. It literally lifts jokes from those shows, just not very well. Ok, this bit about everything in life not ending well is kind of funny. "Hey everybody, I just brought home a puppy - we're all going to cry soon! I brought home us crying in a few years. Here we go, countdown to sorrow with a puppy!" Maybe it'll grow on me.

I need to find something funny. Maybe I won't find anything funny.

The last year of life has me in a post-traumatic-stress-syndrome funk #49. It's been going on since at least about May or June, when my son got out of the hospital.

But it's easy to forget that there are things to be grateful for.

-My son bought a cookie and a brownie at a bake sale today. That means he has the intention of eating them, although he hasn't yet. But there was a time that wouldn't have happened.

Now this show is grossing me out. Had to turn it off.

-This has been a good week for him, so far. Which means I've also had a better week. This is the first week I've noticed my anxiety level dropping just a tad. My body isn't expecting a disaster every other minute.

-If I had some money, I could pay someone to come in and help me really give a few rooms in my house a good cleaning. Why don't I do that? Give my house a good cleaning, that is. I'm not that guy. I thought maybe I could be that guy, bought a book about it, but haven't read it yet. Maybe what's true is, I'm not that guy right now. Wait, I was going to write about things to be grateful for, not pick on my faults. I'm grateful that we have a house to clean.

Many things are bothering me and one of them is that I haven't been writing. If I was, maybe I'd be dealing with things a bit better. I think there is something about the process of writing that exorcises the voices in my head. I could use some of that. So here goes.

I have been contracting. I have been withdrawing from life, from relationships, and letting my fear and my current lack of resilience rule things. In the past, I would experience this for a while but pull myself up and out and get on with it. I haven't yet done that this time. I do what I have to but nothing more. I'm in too deep. A recent bout of infections has caused MS to flare-up. Not surprisingly, that is not helping anything. I literally don't think clearly when this happens, and there's not much to do but wait it out.

I think something has changed for me relative to anxiety and to worry. I used to be able to quell a lot of it by telling myself vaguely 'oh, don't worry, things are going to work out'. Since my son's rather difficult year, that doesn't work anymore. Because things don't always work out. Sometimes they turn into a scary, hellish experience that rips all traces of confidence and faith out from under you.

And I just don't know how to get them back.

I miss it. I miss the days when I trusted myself, and had faith in myself.

A friend sent me a link to a Salon article about Jeff Tweedy. I had watched the Wilco PR machine churning for the past few weeks. Their new album came out on Tuesday, and it is the first one they've produced on their own label. So it's a big deal for them, and they've been everywhere publicizing it. I haven't listened to a single song yet. I did read the Salon article. Which lead me to read many other Salon articles. I had never spent much time there. I landed on a column called "Since You Asked". Someone writes in with a problem. The columnist answers, and then all the Salon commenters have their say. You'd have to be pretty gutsy to send a letter in. The commenters are a mixture of supportive, nurturing, critical, and downright nasty. After reading a few letters from people who had the nerve to send them in, I thought about myself sending one in. Oh, the field day the commenters would have with me. "Stop thinking about yourself!" "You don't have it as bad as the rest of us!" "Be thankful for what you have". Ok, ok, ok, I know. I have no right to complain.

But there is one errant commenter, in my mind, whose voice quietly persists.

"Give yourself a break for a while. You've been fighting a battle for your son for some time, and it has not been easy. Of course you are letting your relationships slide. You can't stand being such a downer and you shut things down before you get dropped or rejected. It kinda makes sense. You haven't been at your best. You've let your resilience sink underground. The good news is, you can retrieve it. It happens little by little, bit by bit. You find something good to do for yourself one day, and keep it up through the next day. That's the kind of success you can shoot for now. This is rebuilding - what is that Paramore song? Brick by boring brick. Pick yourself back up, and pick up the next brick. You don't have to criticize yourself for not building it faster. Each brick counts, and each brick stays." Ba da ba da ba da ba da.

The next brick. The next dirty dish. The next meal. The next drive into work. The next consultation with a dr.

I remembered today how when I used to go through a bad time as a teenager or young adult, I just clung to music. Music would get me through. It's white-knuckling it -- holding on to whatever grounds you so tight your knuckles turn white. I wonder if music can work for me now. Do I still believe? Neil Young does. I think maybe Eddie Vedder still does. "We all walk the long road". I used to lean on the music and let it hold me up.

It's been a long time since I've felt such terror about life. I can see the reasons for it - losing my former identity from my career, seeing my husband getting laid off, watching things going off the rails with my son, feeling my withering connection with my daughter, starting a new MS drug, being afraid of getting older. For some reason, it surprises me that life requires more courage the older I get. And that I seem to have less of it.

Brick by boring brick. Yes, finding the things to be grateful for is good, but maybe actively building those things into a strong foundation is even better. I don't know that I can trust it, yet. I guess picking up that first brick, and the one after that is an act of faith. Acting as if. I've done it before.

Lions and Tigers and Bears

2011-07-29T11:31:00.023-06:00

When I was in the hospital with Adrian, I spent many hours at night, while he slept, researching everything I could. I couldn’t really accept their diagnosis of anorexia. He had never wanted to lose weight. I read about OCD, eating disorders, schizophrenia. I even read about something called PANDAS. When I first heard it referred to, I thought “this has to be him”. PANDAS - ‘pediatric autoimmune of neuropsychiatric disorders associated with streptococcal infections”, in other words, OCD that develops from the strep bacteria. His problems that landed him in the hospital had started when he’d had his tonsils out in mid-November. He’d always had OCD-like tendencies, and had temper tantrum-like mood swings that we referred to as ‘meltdowns’. Some times were better than others, I was never sure what all the variables were, exactly. The meltdowns seemed to relate to his expectations and his perceived performance. But he'd gone off the deep end after the tonsillectomy. And the whole reason for the tonsillectomy was chronic strep.

But the more I read about PANDAS, the more I wondered. I read that its hallmark was a sudden onset. As in, one day your kid was fine, and the next he was a completely different child. Adrian had always shown these tendencies. So I wasn't sure it fit. At this point in my relationship with Children’s Hospital, I didn’t think bringing it up was smart. I didn't think he completely fit the traditional profile. I had already fought them on the anorexia thing, and I was being told that all his brain issues would clear up once he got back to his target weight. About which I was skeptical. But I didn’t want to risk being accused of interfering with his care, as they had already unnecessarily done with Ozzie. I couldn’t risk Adrian not having either one of us there.

About 6 weeks after we’d finished up at the hospital, I wrote a painful blog post on where things were with Adrian. Things were bad. I mean, his weight was back to normal. But his mind wasn’t. The kid was being tortured by his brain and I was tortured watching it happen. A long-time friend, Jay, happened to read my post. He sent me an email saying he’d talked to a psychologist friend of his about what I’d written about Adrian. She’d mentioned PANDAS to him, which he then mentioned to me. He said he thought I may already had considered it, but wanted to mention it anyway.

I started writing back to him, to say that yeah, I had considered it. As I was writing, though, I starting thinking about Adrian a little bit more, outside of the damn eating disorder lens. The kid had had strep about 10 or 12 times in his life. He’d had his tonsils removed because of chronic strep. After the surgery, the surgeon told me his tonsils were ‘dripping with bacteria’. His meltdowns had begun sometime around kindergarten or first grade, which was also around the time he’d started getting strep. And his behavior had radically changed after his tonsillectomy. Oh my gosh - I literally interrupted my narrative to Jay and said “I will have to write back later - I have got to find someone I can talk to about this”. Jay had mentioned that he wished he could do something to help. I told him he may well have done something downright amazing just by making me consider PANDAS again.

I started researching PANDAS and doctors. I found stories that were more similar to Adrian. I read that PANDAS can cause something that looks like anorexia. (!) And of course, PANDAS is controversial. A bacteria causing a brain disorder/mental illness? It took western medicine far too long to accept that a virus could cause an ulcer, this was no doubt going to be a hurdle for them. As if finding treatment for eating disorders wasn’t hard enough, this was going to be harder. For the first day or two, I couldn’t find anyone in Colorado who was considered “PANDAS friendly”. I was starting to think I’d need to take him to New Jersey - there was a doctor there who had treated a number of PANDAS kids. I stumbled upon a book called “Saving Sammy”, written by a mom who’s 12 year old son had turned out to have PANDAS. I ordered the book. I continued my research, and did find one doctor whose name was mentioned as possibly being open to PANDAS - he was in Boulder. Dr. Voeller was associated with an Institute for pediatric neurodevelopment illnesses, called “WINSi”. I noticed the address of the institute was same building as my own long-time doctor, Richard Suddath. I looked up Dr. Voeller in our insurance companies directory but no luck.

So I started thinking of other ways that could be more cost-effective. I settled on going to our family medicine practice and seeing what they knew about PANDAS. I can't say I had high hopes, as I'd never been all that impressed with the practice. But I had to go anyway to get Adrian’s prescriptions transferred from the doctors at Childrens, so I made an appointment for Thursday. I was leaving on Saturday for a business trip to Portland and it would feel good to get this all moving forward.

Thursday morning, “Saving Sammy” arrived from Amazon. i was on my way out the door and threw it in the car, thinking maybe I’d show it to Dr. G., who I had my appointment scheduled with. I wasn’t sure how easy it was going to be to have them assume the prescriptions, since they were all psychiatric meds, so I was a little nervous. Adrian was at band camp, so I had some time for lunch before my appointment.

I got into the office at about 3:00. Dr. Granston was running late. So I waited around and started reading ‘Saving Sammy’. I could not get through more than a few pages without tearing up. I felt like I was reading my own child’s story. it was shocking how much Sammy and Adrian had in common. Not everything - there were some major differences, too. But there was enough there that I just couldn’t help but start believing that yes, “this is something”.

Dr. G. clearly had ten-thousand things on his mind when he came in, and he was in a hurry. He took a look at Adrian’s notes online, wincing a bit. The records from Children’s had made it into his file. Those records would make anyone wince. He asked me some questions, and I told him some of the gory details about our experience. He had no problem taking on the prescriptions and gave me 5 refills for each one. I felt a little stress go out of my body. So I took a deep breath, grabbed my ‘Sammy’ book, and dared to ask him about PANDAS. Had he heard of it?

Crickets. 

 In his defense, he wanted to help me. He saw that this had been a nightmare, and he’d shared some personal things with me about his sister and his mom. But he wasn’t the guy. He didn’t know about PANDAS, let alone believe it could happen. I hadn’t really expected anything, though I was glad to have the prescriptions.   I went out to my car.

Having had much of the day on my own, I was in my favorite ‘go with the flow’ space. A recent book I’d read called it ‘float more, steer less’. As I got in the car, I thought, ‘I’m going to float’. What that means to me is, I will let my intuition choose my next move. With Adrian still at camp, I had time. So I drove over to the building my psychiatrist worked in, and walked onto the first floor, where Dr. Voeller’s office was. I found a door to the suite for “WINSi”. WINSi is an acronym for ‘Western Institute for Neurodevelopmental Studies and Interventions’. I walked in.  There were a series of offices - occupational therapists, speech therapists, psychologists, neurologists. It felt encouraging, but there was no reception type area that I could see. I thought, “oh, maybe I just have to call them”. I sat down in the lobby to consider. Then thought, “no, I’m here, I am going to find out what I need to know”. So I walked through the section of offices and asked one of the therapists about who I could talk to. She directed me over to Josh, who was in the main office for WINSi. I smiled at Josh, took a deep breath and hoped for the best. I told him that I had a 12 year old son, who had some brain functioning problems and I was looking for help with him.

He gave me an overview of what they do. They run an intensive evaluation and treatment program for children with dyslexia, ADHD, Asperger’s, anxiety disorders and other neurological problems. I said ‘my son is dyslexic, and he has a huge anxiety disorder - I’ve been told it is OCD”. He said, “well, we find that kids with anxiety tend to process it in ways that look like OCD, but aren’t true OCD.” That sounded very true to me. I said “do you guys know anything about something called PANDAS?” Josh said, “oh yes, Dr. Voeller, our neurologist on staff, she is one of the leading experts on PANDAS in the western US."  That’s when I burst into tears. Not because I had assumed she was a man, but because I had landed in heaven. Here's a neurologist who specializes in dyslexic kids and knows about dyslexia, anxiety, OCD, speech problems and PANDAS. In other words, "Adrian".  

I said “I need my son to see Dr. Voeller”.  

He told me she was very hard to get in to see. He took my information and told me he’d try and get me scheduled.  Two days later, I left for Portland, OR, for a software conference for work. It was a bit of a risk for me to go - I wasn’t sure that Adrian was going to handle things ok. But another part of me thought we could both use a bit of a break from each other. So I ended up going. The first few days were rough - he was calling me every couple of hours - he was having a lot of trouble with his mind. I talked with Ozzie and he suggested that I only talk with Adrian once or twice a day and let Adrian figure out how to get by without me.  I was in Portland for 4 nights. On the third night, I got a call from Dr. Voeller. She was working late at her office - around 9:30 pm Colorado time. I told her Adrian's basic story, she asked me some questions and she said that Adrian sounds like a very possible/probable PANDA syndrome kid. I cried, of course. She said that the tonsil surgery could very likely have stirred things up. Her 'institute' does a 10-week day treatment program, from 9:00 - 2:00, m - f. The kids do one-on-one work with various kinds of therapists and specialists. It must cost a fortune. They gear each kids program specifically for them - if they need to learn how to deal with their disordered mind, or speech therapy, etc. that’s what they do.

I have to work out the insurance and financial stuff somehow. They aren’t fully covered by any insurance, but they can qualify for reimbursement as an ‘out of network’ provider. So my task is to figure out which CU insurance will give us the greatest benefit. I'm guessing it'll cost us $20K however we do it. She told me they are very, very booked up so we'll probably have to wait until the October session. I don't care - we have waited this long.

We'll get in to see her before then, and she'll spend some time with him. She said she’d want to tweak his medications a bit, and he’ll probably do a long course of antibiotics. I kept telling her little things about our experience and she'd say "yeah, that is not uncommon. most hospitals really don't know how to diagnose these things correctly', etc. She was very reassuring, and felt that they could really help Adrian.

I can't help but feel like angels are watching out for Adrian, somehow. Because my goodness, if the universe is going to let young kids become mentally ill, then I think the angels have their work cut out for them. I rarely say something is "not fair", but after everything I saw at Denver Children's, I'm willing to say it now.

If I can get him in to Dr. Voeller's progam, then that is going to be 'school', for now. After that I'll see how he is doing. I'm thinking for the rest of this year (7th grade for him) I'd do part-time home school, part-time some other school. F/T home school just won't work for me. Even Dr. Voeller said she didn't think it (f/t home school) was the best thing for either me or Adrian.  Whether or not Adrian has PANDAS, I feel that we have landed in the right place. I know they are going to be able to help us. That is a good, good feeling.

Work in Progress [in more ways than one]

2011-07-14T15:48:00.022-06:00

I went back to my mother....I said, "I'm crazy ma, help me!" She said, "I know how it feels, son, cause it runs in the family". Can you see the real me, can ya? Can ya?

Writing a blog post feels kind of quaint to me right now. With Facebook, Twitter and G+, what do I need a blog for?

Well, let's take a look at the mediums. Twitter...I'm flat out in it for the comedy. I balance this out with the 10% that I'm in it for the MS community. Which may be even less than 10%, because those of us with MS don't post all that much. We are too busy having MS. (See? Comedy.) So maybe 8% MS community, and the other 2% is information - like certain NPR shows, Roger Ebert, some gluten-free bread company. When I post on Twitter, I am usually imagining myself standing up in front of a fairly small audience, making my dopey little comments on life. It's really fun, and I enjoy reading others. If I follow someone who just becomes totally annoying or depressing, I stop following them, at least for a while.

Facebook - eh. I have a love/hate relationship with it. I love that I can post something there that I think is funny and get almost instant feedback. And I hate that I love that. I find 60% of what gets posted on FB to be annoying. Well, let's say 60% of the posters are annoying. Why I am reading stuff from people I find annoying? Because they are my "friend" and I'm supposed to. I can't play that game anymore. I'm starting over at G+. But I will miss the 40% that I do love.

The attractiveness of Google+, for me, is the circles. And, that there is nobody there! Andy Borowitz has posted a series of snarky G+ comments on Twitter this week.(5) "They're funny because they're true!" A funny thing to me is that Andy is one of the 6 people I have 'circled' on g+. Writing to a nearly empty crowd is somehow really soothing.

I still have a blog because - I like to write, 140 characters doesn't cut it for the stuff I write, and I don't want everybody on FB to comment on it, I don't think. It's hard to want to express but also be so stupidly sensitive to criticism.

And a blog posting is a place where I can sort some stuff out. My thoughts, my fears, whatever it is I need to work out, writing it a good way for me to do it.

And here is something I need to work out. My son was in the hospital for a few months. That, literally, is a book that I am writing. Whether I am the only one who ever knows about it or not, it needs to be written. So it's hard for me to write about my current issue, because the back story is far too unwieldy to tell here.

The fallout from the last nine or ten months of our life is that my son, 12, practices the drums...oh, about 6 hours a day. He also came out of the hospital with a brain disorder that they tell me is OCD, though that description really does not do it justice. The two things (the drumming and the OCD) frequently collide. I'm not really convinced it is OCD. I sometimes think it is bipolar disorder. But for now, we are using the OCD lens.

Since we left the hospital and stopped the day treatment, my life is 80 - 90% him. I work ~15 or 20 hours a week, from home, right now. He is on psychiatric medication that he gets 3x a day. He takes many vitamin and herb supplements three other times a day. He is still on a treatment plan which requires him eating 4 or 5 times a day. So our days tend to be pretty prescribed, and a bit high-maintenance in certain ways.

When I say OCD, you might think - oh, he has a germ phobia or washes his hands too much. Those things are part of OCD, though it turns out that OCD has a wider footprint than I ever knew about. Sometimes OCD can sound rather harmless. But it is, I think, the degree of either the "O" or the "C" that determines how brutal it is. Adrian's version of it is pretty brutal. The "O" in his OCD manifests itself as a 'voice' in his head (he used to call it the 'bad Adrian') telling him he's no good, he can't drum, he'll never be good enough....what I would call a "critical parent"*(0). The critical parent in his head is quite nasty. It can bring him to his knees, literally begging for mercy. The "C" manifests as him saying he'll "never drum again", he "wants to die", he "has to quit". That kind of thing. If left unchecked, it becomes very self-destructive, with him trying to destroy himself. As you might imagine, it is heartbreaking to see a 12 year old boy being tortured like this - and so graphically. His 'voice' tortures him about drumming, and only drumming. I have a theory that it picks on whatever basket you have all your eggs in. How you define your identity, perhaps.

Now, as far as I can tell, we all have mild or faint versions of this ourselves. Many, maybe most of us, eventually learn how to tame those thoughts and our reaction to them. Most of us don't have such a painful degree of it. It has been explained to me that OCD is like a broken 'sorter' in the brain. The OCD person can't distinguish easily which thoughts they should keep and listen to, and which they should just toss out and not try and do anything about.

I'm of the opinion that children shouldn't have to deal with this. Let's leave it to the adults. I want there to be a grace period of about 18 years before any type of mental illness takes up residence. But it 'don't really happen that way at all.....nah nah no. Don't happen that way at all'. (1)

My own stuff started at about 13. I was a walking eating disorder, and four years later, a walking clinically-depressed high school senior. If you are going to suffer from an eating disorder and depression - try not to pick 1973 or before as the beginning of your problem years. Nobody understands it yet! Better to come back 30 years later and try it.

And that's what Adrian did. Sadly, only some understand it now, 30 years later, and even those people don't completely. But we are much better off than we were.

I am tortured by the 'why'? Is it my fault? is it all chemical? genetic? My church would say it is what they call "the hells". The hells are external spirits that attack us via our thoughts, they say. I just can't think of it like that. For me, it is a part of Adrian that is fearful and it deals with the fear by being very, very critical.

The piece I am trying to solve here is my own reaction to Adrian when he is being tortured by his voice. I have to be at the top of my game to deal with it well. He is usually screaming, banging his head against a wall, crying, shouting, saying "I want to die! I want to die!". In a perfect world, one's mom would react to that kind of thing with compassion. "Oh honey, I am so sorry. That must feel terrible. How can I help you?"

But something goes awry for me a lot of the time. I think I understand one part of it, which is the frequency. It happens a lot, and I don't like it. The chronic nature of it makes me walk on eggshells all the time. What is going to set him off this time? I'll never know, and I can't control it. Part of his treatment at the hospital and following was intentionally regaining a fair amount of weight, to get him back to being able to, well, live. He weighs more now than he ever had, and he's grown a bit. I don't think he knows how to manage his body, and he is constantly - and I do mean constantly - bumping his head, bumping his elbow, banging his knee, cutting his ankle. And always with great force. You name it. It is just happening all day, every day. And everything that happens causes a pretty over-the-top reaction in him. Everything is a catastrophe. He bangs his foot and screams like a chainsaw just cut it off. And the screams cause my adrenaline to go through the roof, and I start getting all PTSD on him.(6)

What this has done is worn done my sympathy account. (2) And when I say worn down, I mean, decimated (3). I honestly don't have it. Don't even know where to get it a lot of the time. I'm pretty sure this would suggest that I am not doing something right, taking care of myself - whatever. But right now doesn't feel like it's my time to do so. Writing this is my way of basking in luxury -- and it is a pretty good one.

Another part of it is something in me that reacts to him expressing his angst so publicly, and also reacting to what I think comes across to me as 'weakness'. When I say that, I don't mean it as a conscious judgement. What I think might be close to the truth is that there is a deep part of me who was never allowed to do that!! It was not cool to cry so much, to whine, to struggle to openly. No, what I learned was that you do NOT do that out in the open in your family. You are supposed to hide that ugly stuff. I boy, did I do a good job of it. Until it started leaking out of me in my 20's and 30's.

I hate that part of me. I mean, the part of me that is kind of weak, and that does struggle, and does cry. I've internalized it as not 'being ok'. I'm pretty sure that I need to alter that. I need, actually, to embrace that part of me. It's the only way I'll be able to authentically embrace Adrian when he is in that state.

Don't get me wrong - there are plenty of times when I can rise to the occasion and I truly bring it. I Am There For Him. Big time. I spent 8 weeks in the hospital with him, and never actually lost it in front of anybody until after we were home. Impressive, but perhaps not so smart. I just store it and store it and store it until it has to erupt somehow. But I had to.

It seems that when the shut-down, scared, frustrated child in me meets up with the shut-down, scared , frustrated child in him, well, explosions tend to occur. The positive thing about the chronic-ness, is that I've had a lot of practice and have even learned how to fake it. There are times that I do not have "it" to bring. So I act 'as if', as they used to say in 12-step. I just act like a compassionate mom. Usually, I am radically opposed to being any thing other than authentic, but I've had to let that go, at least for a while. It's weird for me, because what I always used to have was too much compassion. I felt everybody's pain, and quite deeply. To not be able to have it all the time for someone I love so much feels so wrong. Yet, I think it is a signal to me that I am not doing all the gd maintenance on myself that I am supposed to.

Really? That is just hard for me to believe. I keep having to learn this, and I never quite get it right.

I know its true, because when I do process all the bs in my head and my soul and get it out (like, writing about it, let's say), then I can go back to my life and have compassion again. It sounds like a no-brainer, but for me it isn't. I somehow trained myself to do the opposite, and undoing that training is harder than you might think. If I think about it enough, I'd say that I had to train myself to keep it all inside - that was the way of the family I grew up in, like many in my generation. It was my own perception of how to get by and feel safe. It wasn't wrong - it was just my survival mechanism. And now it's not serving me so well. What I learned from my original family was -- you don't express your negative emotions until they explode out of you, uninvited, and cause big conflict. You don't say how you honestly feel because you don't want anyone to have their negative emotions explode all over you. Emotions are dangerous.

Yeah, yeah, ok. How do I teach my kids something I don't do very well? The only way I know how to is to just talk about it. And talk about it from my own experience.

Some of the bs I keep inside of me is what you might call existential rage.(4)

Such as,

"Really, universe? There's another gd spiritual lesson I am supposed to learn on this stupid- ass journey?" Or,

"Seriously, universe? You think making my 12 year son fucking want to die is a good idea?" Or, "Wait, I am supposed to live with all the pain in this world and just go on like it isn't happening?"

Or, "Oh, I see, we don't figure out everything we needed to know in life UNTIL OUR LIFE IS NEARLY OVER? WTF???"

You get the idea.

Not to mention - have I told you my son practices drums SIX HOURS A DAY? He used to practice about 30 minutes a day. No problem! I have a rule that I never tell someone in my house to stop playing a musical instrument. I don't know how to survive this drumming thing anymore. I need a solution. The flip side is, he has become a very, very good drummer and it is his passion in life. I am a classic case of someone who tolerates, tolerates, tolerates and then explodes...whether it is chronic pain, chronic rape, or chronic drumming. At least now I am aware of it.

I need to keep working on his. I think I'm getting to the thing I was trying to figure out. I am going to make an genuine effort to fill myself up with nurturing 'stuff' in an effort to keep my sympathy and compassion accounts filled up. It's not easy living with Adrian right now. It's like I had another baby, only this baby is 12, and is a bit mentally ill right now. And I haven't even mentioned his GI problems.... :-)

I get myself into trouble by thinking "hey, it's not supposed to be like this." Actually, I don't think that is true, even though I frequently think it. It's a fairy tale that we bought into that tells us that we aren't supposed to have pain. Life is suffering, sometimes, and there doesn't seem to be any way around that. Buddhism would tell me to let go of my attachments and I'll reduce my suffering. And, it's true. I believe my problem attachment at the moment is to the idea that my son shouldn't have to be dealing with this. And possibly also that I shouldn't have to be dealing with this. Gotta get over that.

Notes

(0) Parenting is a continuum from Critical parent ----> Nurturing parent. How I learned about this was from a guy I met in a bar, in Baltimore, I believe it was. Eric, his name was. He was in the middle of a lawsuit against Priceline.

(1) Lyric from Pete Townshend's "Naked Eye". Great song.

(2) See my old friend, sociologist Candace Clark's work on sympathy. She published a book about here.

(3) Yeah, I know the "real" definition of 'decimate'. However, there are at least two other definitions now that are accepted, and I prefer to use them. I'm only partially a word snob.

(4) At first, I thought I made this term up. I am all about existential rage. But then I googled it, and it turns, no, of course I didn't make it up. I ran across this line: “I'd like to express my existential rage through interpretive dance.” I guess my own existential rage gets expressed by getting angry at my family and random drivers :-) I might consider interpretive dance, though.

(5) Samples:

Google+ is like the random high school party you show up to and no one you know is there.

Google thinks that Facebook is Coke and Google+ is Pepsi, but it's actually RC Cola.

For those of you who have a hard time conceptualizing what a black hole is, log on to Google+

By the year 2050, there will be more social networks than people.

Google+ totally stole the idea of circles from Dante.

(6) Post-traumatic stress disorder. In which, I overreact to any noise, or event. I am unable to relax. I am just waiting for the news that something terrible has happened. I panic when the phone rings. I jump on all fours like a cat at any unexpected sound. I'm going to have to believe that it is a rational response to what happened to him over the last six to nine months, and give myself (and him) a year or so of recovery time.

Not guilty does not mean innocent

2011-07-05T21:32:00.000-06:00

I'll be the first to admit that I'm feeling ornery due to some medication I'm own, so...you know. But now I will alienate everyone by saying: unless you were a part of the jury, you don't get to be so sure that they were wrong with their verdict. Those 12 people have to live with their decision. I would say that maybe they could not live with giving someone the possibility of the death penalty when there was any doubt about what happened. Be pissed at the prosecution, not the jury. I wasn't surprised by the verdict - there was no cause of death established, and no actual evidence to link Casey Anthony to her daughter's death, other than Casey Anthony being a very unlikeable, unstable and dishonest person.

Our justice system is meant to err on the side of the innocent, and that means that some guilty people will go free. What's worse to me is sending an innocent person to jail. I suspect Casey Anthony will implode on her own, in some way, at some point.

Groundhog Day

2011-04-21T01:28:00.000-06:00

Adrian has had several really good days. He is slowly gaining weight - about 2 lbs so far, which is ~10% of the way towards where he needs to go. His heart rate is responding positively - several nights in the mid-40's. When we got here his nighttime rate was 28-29. He'd probably be 4 or 5 lbs up, but we lost about 8 days in the middle of all of it to dr. rotations and therefore didn't get the feeding tube in when they should have. Let's save that story for the lawsuit. Or possibly later on in this update.

So now we are looking at the transition to the Eating Disorder Unit/team. This coming week, he will keep using his feeding tube, and start thinking about going on partial food/partial tube mid-week. At the moment, we are thinking he is going to move over to the EDU around the same time. I am trying to let him get his mind around the EDU as it is a very different environment from what he's come to know and love here in the main hospital. I believe psychiatrists call this Stockholm syndrome :-)

I think Monday - Friday of this week will be very hard for him. But, he is in better condition to handle it than he was 8 or 18 days ago. My goals for the week are to make sure he doesn't get pushed over to the EDU before he is ready. I also need to find out exactly who's 'choice' going to or leaving the EDU is. We were pretty surprised to find out that even though WE asked for him to be admitted to the hospital three weeks ago, once admitted, it was no longer up to us how long he stayed or whether we could take him home at all. Sobering. I do not want to get him admitted to the EDU if it is not up to us to decide when he can leave. In the best of circumstances, we would almost completely base that on what his team was recommending. But this has not been the best of circumstances. There are issues of trust between us and his team and him. I need to know that we have the power back. I don't think I can check him in if that isn't the case. It won't be easy to find a comparable alternative. And I won't check him in against his will. He surprised me today by saying he thinks he wants to do it. The surprise was just that I didn't expect him to get there so quickly. He has an amazingly good intuitive sense of what is right for him, so maybe that is kicking in. So, I'm going to keep doing the homework and pray for the right thing to happen, and for Ozzie and I to know that it is right.

What I am trusting is his own process and his body. The nutrition through the tube has done amazing things for him. It will be such a challenge to replicate what he's getting when he goes back to doing it himself. My true preference would be to let him keep getting it at night, in conjunction with what he does eat during the day. And, that could happen. I'd be happier if he could gain maybe 50% of his weight with the help of the tube. Though I suspect he will opt to ditch it asap once he tries eating again.

The other sobering thing is my concern about him and the other kids in the EDU. He's 12. A very young 12. I'm not so keen on him hanging with a bunch of 16 year old girls who are on their 4th time around in treatment. Not that there's anything wrong with that....but it's too much like prison - he'll end up learning all the tricks of the trade and move on to become a true anorexia nervosa patient. Right now, I consider him a 'medically-induced anorexic'. He wants to eat. He wants to gain back his weight. He doesn't want his stomach to hurt. It has hurt so much less while on the tube. He doesn't want to get fat, but he seems to understand the difference between healthy weight and overweight. So I will talk to part of his team tomorrow about that -- about what age group he will hang with based on what kids are in there now.

We have come a long way --- the difference in him is remarkable, tangible and heartening. The staff has gone from thinking he is a psychotic, violent flight risk to thinking he is the sweetest kid they've ever known, with occasional spikieness. If he can get even partly through this program, he'll get help that he really needs with anxiety management, stuck thoughts and his fear of stomach pain/constipation. The thing that got us into this whole mess in the first place. Which, I'm not going into any of that here. That is a further indictment of Children's Hospital and also me, as I was doing too good of a job at being the 'good MOC*' to the authoritative dr. *MOC is the notation for 'mother of child' that they use in the chart notes. "MOC is freaking out that they changed the Miralax dosage time"!!

Things I will not miss from staying in the hospital for three weeks:

-Emptying out 'hats' of pee. There is a pervasive odor in the room that does not take a break.

-Having another person in my room 24 hours a day straight, taking notes on every effing thing anybody does or says. I haven't had an unobserved conversation with my son for 17 days.

-Dire lack of sleep.

-Coordinating a wheelchair and a tube pole that is hooked to Adrian's nose around to go out for a

'walk' with him. I haven't earned my license for it yet, and the accidents are traumatic.

-Dealing with everyone else's needs and personality quirks. You really get to know a lot of the staff, especially when you have what they call a 'one-on-one' assigned to you. A one-on-one is a Mental Health Counselor who just stays in your room for their 12 hour shift, writing every 15 minutes into the chart on the computer. One of the ways you can qualify for this is when your son, the patient assigned to bedrest, decides he has to leave the 8th floor and find the nearest drum kit. It turns out this is forbidden. Defcon1. (Although I comically kept calling it Defcon5 the entire first week. Thanks to my geek friends for gently correcting me.)

Some of the 1:1's have been wonderful with Adrian. One or two of them are far too controlling, interruptive and have a need to be just a little too helpful. It drives Adrian crazy. I distract those types by making them talk about themselves. Moohoohaha. But the fun ones make life here better.

-More interruptions during the night than having a newborn.

-Seeing my son screaming, restrained, being carried from the bathroom to the bed and going out of his mind with fear. A few times.

-The teaching hospital thing. Look, I've worked at universities my entire career. I am a firm believer in higher ed. And, if your kid is having a life-threatening crisis, you might consider avoiding the teaching hospital. Organization and communication isn't the strong suit. And I do believe they have good intentions, it is just tough to implement such things in a multi-level, 'no one's in charge'-type bureaucracy. Pretty much everyone here is 29. Yes, I guess I've reached that age when the adults are so much younger than me that I don't recognize them as adults. And, there is nothing wrong with being 29, but you have limited experience as a dr. at that age. Tradeoffs. In this particular case, I can't help but wonder what would have happened elsewhere. Yes, Avista, I'm looking at you.

Things I am so thankful for after staying here for three weeks:

-Dr. Dan Reirden. Not wanting to be a drama queen, but I believe he just about saved Adrian's life 8 days ago. He told us on day 2 or 3 that the kid needed to be on a feeding tube. We believed him. Adrian got there himself a few days later. But 'Dr. Dan' had rotated off and someone else was 'in charge'. I would ask about the tube and was told, "oh, let's give it a few days". They talked Adrian himself out of going on the tube. I'm not over it yet. Dr. Reirden came back 8 or 9 days later. That rather fateful Saturday morning, I was temporarily kicked out of the room while they were trying to calm Adrian down and gently remove him from the upper right hand corner of the window, I came to the realization that I had to demand they get him on a tube and give him some medication to reduce his malnourished-brain-induced-traumatic-reaction to every single thing. The kid could not think. They should have gotten a penalty flag every single day since about 9 days earlier for unnecessary trauma. I went back down to the room, just in time to see good old Dr. Reirden walking toward me from the other hallway. I'd been up for 4 hours, he'd been back on for 2 and we'd both come to the same conclusion. He started explaining what he wanted to do. He actually told me that Adrian had *lost more weight* since he'd been at the hospital. I listened, he said 'what do you think?' I said 'dude, you had me at hello 9 days ago.' He was the lucky one to explain to Adrian that they had kind of screwed up and boy, he did a fantastic job talking Adrian back into the idea of it. He also prescribed an extremely low dose of a better medication to help with his over-the-top anxiety. And for a week, he was in charge. Adrian really liked him.

24 hours later, things were different. No outbursts. More sleep. 48 hours later, he already looked just a little tiny bit more like I'd remembered him last fall. A week later, he is acting something more like his old self. We don't have the laughter back yet. He will laugh politely, but not the joyous and contagious sound we had come to love. I hope someday to hear that again. So, thank you, Dan Reirden. Oliver Platt will play you in the movie. One of the benefits to being the author of the book is that I am going to make a deal to also be the casting director.

-I'm very thankful for so much of the staff we ended up with. We had some nurses and 1:1's that have been just golden. They were able to see past the freaked out boy and get a glimpse of who he is underneath. Which paid off really well for them, as he is also grateful and does things like burn them CD's and bring them lollipops. It took us a little while to find our peeps, but we did find them.

-What a learning experience for Adrian. He's going to be wiser at 13 than I was at 40.

-The dogs that visit

-My friend Paul, his family, my husband ozzie and his family, and everyone near and far who has offered support. I'm a bit sensitive about Adrian's situation and who I tell the story to. I don't think everyone has the capacity to get it, and I'm lucky that there are people close to me who do.

-The tootsie pops in the gift shop (Adrian negotiated with Dr. Reirden that he could have one tootsie pop a day while on the tube f/t).

-Our first resident, Dr. Jasper. He took the time to develop a real relationship with Adrian, and Adrian trusted him. We lost him to 'rotation of service' a few days ago :-) (To be played by Chris Elliot in the movie.)

-Dr. Kaplan, who, although I didn't agree with his avoidance of the tube, I liked his weary style. "I've been doing this for a loong time", he said several times in one day. He told me, and I'm paraphrasing here, 'oh, you know, it's a teaching hospital and everyone thinks they know everything and they need to be seen and so sometimes the right decision doesn't quite.....just call me if anyone tries to mess with you.' Casting: Latter-day Bill Murray.

-Shandra, the favorite nurse. She gave us her number to call her on her days off if 'anyone tried to mess with us'.

-Baba Ganoush, the 1:1 sometimes known as Erin, who is the best Yahtzee-playing, Scrabble-wrangling playmate a12 yr old boy and his mom could ever want. I adore her. I think we've spent 5 12-hour daytime shifts with her. She and her mellow-yellow ways will stick with me for a long time. Named after some nicknames in "Wedding Crashers". Can't figure out the casting yet. If I could get a young Ellen DeGeneres with a blond, corkscrewy wig, maybe.

-Matt the CA who doubles as a 1:1 on the weekends. He gave me the real gen-er-al hos-pi-tale scoop, and helped me understand why it felt like we were in hell. I'm thinking Rainn Wilson will play him, though it could be Bobby Moynihan from SNL.

-Harold Ramis, Bill Murray, Danny Rubin (screenwriter) for the film "Groundhog Day". I couldn't have done this without you. The film gave me a framework for my life here and inspired me to get it right.

How Can I Go To a Church?

2011-03-27T16:39:00.016-06:00

I've attended a church called "The New Church" for the past 5 years. I like the community. I don't necessarily believe everything that they profess to, but I like being around people who are trying to do the right thing in their lives, and who intend to act from love. It's the only church I ever attended that has the freedom to say that other religions (or no religion) can also be fine. I have my own words for things - I believe that there is a higher love and consciousness and that is what I am referring to when I reference "God". I don't believe that it's our place to make certain judgements about each other. It's impossible to know what is going on inside someone's mind, spirit or body. What keeps me there is the music, and the people I play it with, which includes the pastor. I love playing in the band, and I love hearing live music with a spiritual bent (I am a Who fan after all) when others play it. And, I love to pray. When I first met the pastor, I noticed a huge poster of The Beatles on his office wall, and I figured this was a match made....well, in heaven.

Marriage is a big thing with the New Church. Going there has really helped my own marriage with Ozzie. Ozzie and I are the last people you might expect to go to a church. But we find that it gives us an hour or two to evaluate ourselves, and our life together, and make changes if we need to.

Today, we were talking about marriage, and what is appropriate inside and outside of marriage. My husband Ozzie made the point that not everyone has the opportunity to be married, so maybe it can't be so black and white? He got into a conversation after the service with the just-out-of-seminary assistant pastor and was told that 'homosexuality is something to recover from'. That prompted Ozzie to write a bit of a protest to the pastor, who was away. That hadn't been the stated point of view of the our local church in the past, as we knew it. Granted, the Boulder version of the New Church is probably considered a bit out there by the 'corporate' church. Ozzie did a little research and found a page where a New Church administrative group wrote up a summary of their thoughts on homosexuality. It prompted me to write this as a comment. (I don't recommend reading the page, although this article was the lone stand-out in terms of being written by someone I'd want to hang around with.)

"It's interesting to me that the New Church, and Swedenborg, seems to go out of its way to explain the "non-literal" translation of The Bible, Old testament and New, yet takes all these alleged references to homosexuality at face value.

I would propose that the New Church is limiting its consciousness by how it is choosing to view body type. My body type looks like a woman. My gender seems to be mostly feminine. Others I know with female body types have much more of a masculine gender - with the 'traditional' masculine strengths. And vice versa. Many of those more masculine women are labelled as lesbian because they are attracted to the feminine in another woman.

If you look at the study of intersexed humans (once called hermaphrodites) - those who are born with mixed or ambiguous genitalia - you find heartbreaking cases where a doctor made an arbitrary choice that 'this is a girl' for someone who clearly identified as male. What most enlightened people do theses days is let the child grow and self-identify as male or female.

The existence of intersexed humans to me clearly shows us that gender and body type do not always concur. It seems then that it could be true in all sorts of people, not just the physically intersexed. Why any of us should decide what body type someone else needs to be with...I don't understand. Consider gender as a continuum. We all fall on it somewhere. We've all been given a body that also falls on a continuum beween male and female, with intersexed humans somewhere in the middle.

Why not let the person inside determine where they fall, and who they are attracted to. Perhaps masculine----->masculine is an "abomination". I don't know. But there is no way for someone outside a body to determine which gender that person truly is. Perhaps gender *is* a spiritual issue, not just "natural". Judge not what you cannot see.

I've read just about all of the articles referenced here. Rev. James Lawrence really touched me with his point of view.

I find many of the other articles to be impossible to differentiate from any other Christian denomination, other than mentioning and quoting Swedenborg. I think the General Church could try to go the extra mile and think outside the box on the matter of gender -- in many ways, not just pertaining to homosexuality.

There are some good films and documentaries that delve into the complex childhoods and lives of intersexed humans.

With all the emphasis on believing in a God we cannot see, and not relying only on our senses, I don't know why we are so hung up on the things we can *only* see.

I'm not giving up on church, however. I think change comes from within.

Violent Explosions

2011-02-12T20:53:00.010-07:00

Today I spent part of my day at a birthday party with my son, who is 12. His friend up in Loveland, CO had a party at an Airsoft competitive gaming place.

I didn't have any idea we were going to a party - I thought he'd been invited to come up for the day to play at Adam's house. I got to the place, and I was at a loss for what to say. There are six or seven kids running around in camoflage, freaky facial masks, padding, goggles and, well, machine guns. Now, I had seen a Airsoft gun in the past - I even bought one for Adrian. It was a basic handgun-style plastic BB gun. The gun shot at a very low 'force' - it didn't hurt much, and we had rules about where it could be pointed. Never at a person. He played with it a few times and then forgot about it.

The experience today was like a bad movie. No one asked me to sign a waiver, there was no safety presentation, there were no rules about where to shoot. In fact, the whole point was to shoot at and hit the other players. And these guns are very different from the little handgun we'd had. At a close enough range, you end up with a bloody welt from the shot. (I didn't know that at the time.) But Adrian seemed game - he hadn't seen his friend in a long while, and didn't want to wimp out. I eventually left. I was supposed to come back in 4 or 5 hours. At one point, before I left, two of the kids came running out to tell Adam's father "Michael got mad and shot Adam point-blank in the face!" I knew Adrian was not going to last that long. The drive home was about an hour, and 15 minutes after I got home, he called and said he was done. He hated it, had two welts on his back, said the guns were more forceful than he had realized, and that he found there was nothing fun about it.

Later, I read a little about Airsoft, and found that these competitive gaming places exist around the country, but kind of under the radar. They are purposefully staying low-key, so they don't raise the hackles of Boulder-heads like me. Now, I don't know if I care that much what other kids do with themselves. No, wait. I do care. I just don't think it's up to me to decide that for other parents. If I had known what I know now, after reading about the current variety of guns, the injuries.....I still would have let him decide. But I really wouldn't have left, and I wouldn't have been so genial about the whole thing.

I'm pretty aware that I have found a nice world for myself here in Boulder, where there are a lot of peaceniks like me. And I know that it takes all kinds to make the world go round. I know that playing with BB guns is a far cry from the real thing. I just don't spend much time with people who are intentionally into violence. I don't really understand the intentional glorification of war in young kids, the love of guns that seem to have no purpose other than to brutally kill people, and the lack of attention to teaching the kids to respect the force of the guns. So it was enlightening for me, and I've once again expanded my little worldview. And yeah, I was happy to grab my kid and leave. I'm not completely anti-gun, and I think studying combat strategy can be interesting. But the 12 year olds in cammo, terrifying face masks and the resulting welts, anger and hidden tears were not confidence inspiring, in terms of the kind of people we're trying to raise our kids to be. I know not everyone would agree with me.

Speaking of violent forces, I was driving home from a Superbowl 'party' last week (a theater that serves food, drinks and broadcasts the game) right after half-time. Something that looked like a big chunk of black ice or snow came flying off the car in front of me. This is at about 65 MPH on a three-lane urban highway, I-25, just north of Denver. A mere half-second later, I heard an explosion that sounded like a gunshot, smelled something that smelled like burning gunpowder, and felt a huge force under the driver's seat. At the same time, my seatbelt started tightening around me with the force of a tornado. The only time I've ever felt a force like that around my hips before was childbirth. I had to try and get it unbuckled because I thought it was going to cut me in half. I had no idea what had happened to the ice chunk, with the calamity going on inside the car. I felt fortunate that I didn't swerve off the road just trying to manage the 'inside the car' scene. I was lucky that everyone else was apparently still watching the game - I was able to quickly slow down and pull over to the side of the road.

I had no idea what had happened. I really didn't. I checked all the tires, I tried to identify the smell inside the car. I could only think of gunpowder and fire. I checked the front end - there were no dents, no sign of impact. The driver's side seatbelt was useless. It had no more tension or give, and I couldn't pull it out enough for it to be usable. I tentatively got back in and started the car, to see what would happen. An airbag light I'd never seen before came on, on the dash, and the passenger seat airbag light was flashing. I was about 8 miles from home, and intuitively felt like I could get the car home if I drove it.

My mind was just going over all the possibilities, and the closest thing I could imagine was that, when I saw the chunk of ice, I had naturally tapped the brake to slow down a little. And that somehow the car assumed I was heading for an accident, and had tried to deploy the airbags. For some reason, they didn't deploy. I assumed the seatbelt tightening was what was supposed to happen in the event of an accident, but I didn't feel as if I'd had an accident. I didn't know what the loud explosion was - I assumed it was related to the airbag not opening. I had a horrendous bruise on my right hip from the seatbelt getting all rough with me.

I went to two Honda dealerships, and talked to four different people before I got a full explanation. It took me three days to get to the right person, who was able and willing to tell me. It turns out in newer cars there is "an explosive device" connected to the seatbelts that deploys when the cars 'black box" senses a likely accident. I was told that there had to have been some combination of deceleration and impact. I was told that normally, the explosion happens when you are already en accidente*, and you normally wouldn't notice it. My good buddy Linda at the Honda body shop in Boulder was my best source, and she told me that most likely the chunk of ice had gone under the car, and caused something under the car to deduce that there was an impact. She said the Honda CR-V is notoriously low to the ground, for a SUV-type car. I asked her - what if my son had been in the passenger seat - would his seatbelt have tightened like mine, or because he is only about 70 lbs, would it not do that, like the airbags? She said "a kid who weighs 70 lbs shouldn't be in that seat." Yes, the same thing would have happened on his side. Because I slowed down immediately, the car decided it didn't have to go to Defcon5 and deploy the airbags. Thank god for that. I do appreciate the value of the seatbelt/airbag thing in a crash. I just didn't understand fully what was happening, and I would have preferred to know.

I left my car at the body shop. Linda called me to say "holy crap, was there an impact!". She said under the car, it was messy and it's about $2500 of damage.

What have I learned from this?

1) Don't bother going somewhere to watch the Superbowl. It's not worth it.
2) I am the kind of person who wants to be notified about things. I want Honda to tell me that there is an explosive device in my seatbelt that might go off sometime when I don't expect it.
3) RTFM. I have not read the entire manual for my car. I basically read the stereo/navigational stuff and read the rest as needed. It's quite possible Honda did notify me about this, I just haven't read it yet on page 263.
4) My first impulse was to go right to Linda at the body shop. Instead, I went to the service department at two different dealerships, and they mostly gave me the old "optic neuritis"** gaze. Always just go to Linda.
5) You can have a car accident with a chunk of black ice.

Meanwhile, I started a new med that was supposed to help me with energy a few weeks ago. It's called Amantadine, and my understanding is that it increases the dopamine that is available to the brain. It, like many things, almost always has a tapering-off effect, so it isn't a long-term solution. It has completely changed the quality of my life. I'm shocked by it. I hadn't realized how weak and low energy I had become. Every single thing I did was a complete effort, and would exhaust me. Using Amantadine (plus caffeine), I am able to almost get through the day. Previously, I would have no choice but to sleep during certain times of the day. I couldn't make a freaking cup of coffee without being out of breath and tired. I can already feel it slowly feeling ever-so-slightly less effective each day. I will probably go up to two pills a day. I'm not sure if you can go higher. It just makes me wonder -- does dopamine deficiency have a relationship to MS? It does in Parkinson's.

I don't know how long this will last, but I'm appreciating every minute. And after it stops working, I will move on to the next thing - Provigil or Nuvigil. What I know now is that my unmedicated fatigue level is NOT acceptable and I will keep trying whatever it takes to do what needs to be done each day. Perhaps the day will come when nothing helps, but I'm going to put that off as long as I can.

xo,

Medicated Trrish

*I just made that up

**The old "optic neuritis" gaze is something I coined from back when I was getting (eventually) diagnosed with MS. After my first child was born, I had a very strange situation happening with my vision that I just couldn't explain. It was like I had a blind spot in the middle of my visual field, though I could see ok out of my peripheral vision. If I wanted to read something, I'd have to turn my head and read it out of the corner of my eye. That's honestly the best way I can describe it. I went to a couple of optician-type people and could not get anyone who could tell me what it was. Four years later, the same thing happened after my son was born. By this time, the web was in full swing, and I was able to diagnose myself. At the time, I lived down the street from an opthamalogist, who confirmed it for me.

While reading about optic neuritis (ON), I was led to read about MS. I was kind of astonished when I thought "hey, that's me". My neighbor told me that many optician-types will not diagnose ON out loud to someone, because 75-80% of ON cases are indicative of MS. They don't want to be the one the gives someone that news. They just want to sell you glasses. So they looked at me and said, "I don't know. You might want to see an opthamalogist." Which I did, but they couldn't diagnose me, either, that first time, for whatever reason.

That just shocked me at the time. I kind of get it, now, knowing what I do about MS.

Have a Positive Attitude About MS!!

2010-12-02T21:13:00.010-07:00

http://xkcd.com/ via Derek Miller penmachine.com Rest in peace, Derek.

Too bad no one outside of Colorado knows what King Soopers is

2010-12-02T14:39:00.001-07:00

My new bumper sticker

2010-10-10T20:45:00.003-06:00

I'm ok if you're gay. by trrish

Discuss

2010-10-09T10:35:00.006-06:00

Meow

2010-08-08T23:01:00.003-06:00

Dear Boulder High School,

Your 'registration forms' app DOES NOT WORK. I entered all the data twice, in two different browsers. Is this my cosmic payback for leading the charge into Peoplesoft at CU a few years ago?

I will fill them all out by hand in the morning. Like I have done every year for the past 95 years with Boulder Valley School District.

We are not getting off to a good start, BHS....

Love,

trrish

I'm Black and Blue from SOMA Physical Therapy!

2010-07-29T18:35:00.001-06:00

For those of you younger than me: http://en.wikipedia.org/wiki/Black_and_Blue

And I refuse to say "and I love it!"

Things I like about Portland

2010-07-28T17:46:00.001-06:00

-The public transit.
-The restaurants and food - a nice diverse variety.
-Moonstruck Chocolatier - really amazing truffles!
-The farmers market a great local products
-Lots of parks
-Independent record and bookstores
-The weather, at least while I was here
-The alt vibe. It's ok to be weird here.
-The feeling of Boulder from 20 years ago.
-$2.30 to take the train to the airport.
-Architecture
-The artwork all over town
-The poetry on the mass transit train cars.
-The rivers and bridges
-The trees
-Some beautiful flowers around

If I thought I could handle the rainy season, I'd consider living here. The one downside for me was that I was seriously directionally challenged the whole time. Which may just be my normal MS'y cognitive experience and nothing necessarily to do with Portland. I was surprised to hear how mild the winters are. It gets down to the 30's "sometimes". It seems like a pretty nice quality of life here. Lots of homeless people downtown, looking for handouts. Again, reminiscent of Boulder 15-20 years ago.

I can tell I'm getting restless and am looking for a change. A job change might be sufficient, but I do find myself thinking about picking up and moving frequently. Though it would be harder than I think. It's ways to overlook the very deep roots I've laid down in Boulder. Lastly, if my dang iPhone cannot figure out that "Boulder" is the word I'm trying to spell when I type Boukder", I may have to go back to a Blackberry. I want the iPhone to learn, like the Blackberry did.

Sometimes you just fuck up

2010-07-28T00:35:00.005-06:00

Quite recently something happened that just pulled the proverbial rug out from under me.

This has not been the best year for me, so far. An MS episode clobbered me in the winter and spring, then a bout with thyroiditis. Terrible, terrible depression associated with the thyroiditis. At the same time, I was starting to develop a very painful problem with my right shoulder. I haven't written in months, and I have lost track of my favorite bloggers.

My 11 year old son was invited to go to DisneyWorld for a few days this summer with a friend, 'Zach'. His friend's mom, 'Mindy', was going to take them both in late June. I didn't think he'd want to go. He's kind of a homebody in certain ways. I had a hard time imagining him being gone and living without us for more than a few days. He'd been away for the occasional sleepover, but never for more than a night. My husband and I talked about it and decided that we'd ask him - if he wanted to go, we'd say ok. It could be a good experience for him to spend time away from us. And he surprised us - he wanted to go. He though it would be fun to spend the time with Zach, and he thought going to DisneyWorld would be fun.

So I said yes. Mindy asked me to write up information about him - what he liked to eat, what his routines were. I wrote up a very honest account of my son, and identified some of the things that could be issues - the heat, making sure he had enough water, making sure there was decompression time, etc.

Meanwhile, we started our summer immediately on June 2 with our family vacation. I was struggling quite a bit with what turned out to be a "frozen shoulder". Also known as adhesive capsulitis. It completely took me by surprise, and really took over my life. I was in massive amounts of pain. We came back from vacation mid-June. I immediately started doing physical therapy and myofascial release therapy massage 4 times a week. I also went in for a cortisone shot (I had tried one early on but it didn't take because it wasn't given in the right location.) For a couple weeks, the shot really, really helped. It started wearing off in a few weeks. I was juggling various painkillers to be able to sleep at night at that point.

I'm having a hard time writing this. My stomach hurts.

By the time the Orlando trip got booked, it had morphed into a 6 day trip in July. We had my husband's family visiting for the first couple weeks of July so I had to rationalize whether or not my son leaving after the first week was a big deal. Mindy had called me to check on the dates. In retrospect, I wonder if she was trying to give me, or her, an out. I had a quiet voice my head asking me if this was going to work. It's brutally hot in Orlando in the summer. Whenever I'd have a conversation with Mindy, she'd say something like "I can't believe you're letting him come with us! I don't know if I could do that." I started secretly wondering if she'd expected me to say no. Surely if that was the case, she would have backed out? I felt like I couldn't back out as everything was booked, and my son really seemed to be looking forward to it. I told myself it would be fine. I just kept telling myself that. One of my mistakes was secretly wondering. I should have just sat down and had a conversation with Mindy.

The trip, it turned out, was a bit miserable. By all accounts. He called me the second day and talked about how different Zach's family was from ours. "Mom, they have to plan everything! We just have to keep going and going all day long with no break." I knew what he meant. Our family tended to be a little more go with the flow, and they were up at dawn, getting to the park early trying to beat the lines. You really do need to do that kind of planning if you are trying to get the most out of your Disney dollars. I get that - I don't think he totally did. He said the heat was unbearable for him. He worried that he was going through his spending money too fast. I had suggested he give the money to Mindy and let her manage it so he didn't have to worry about losing it. That turned out to be a problem. He couldn't track what 'his' money was going towards and whether he had anything left. He doesn't like to spend money, and I really should have arranged that very differently. I should have given money directly to her to cover his food, and not phrased it as being 'his' money. That was totally my mistake. I sent Mindy a text about it and she responded that there was no problem, that my son had plenty of money left.

I talked to him every night. The last night, he asked me if it was ok that he stay in the hotel room by himself while they went out to the fireworks again. I said of course. He had me on the phone for several hours while he was alone in the room. He couldn't wait to get back home. He said they were being mean to him, that they didn't ask him what he wanted to do, that she didn't save him a seat for the parade, etc., etc. Clearly, there were some problems. There was not much I could do, and I just talked him down each night.

We met them at the airport the night they came back. It was very clear that things had been strained. It felt uncomfortable. Of course, they were all exhausted and I figured they needed some space and major decompression time.

Meanwhile, we had friends from the UK that were coming to visit us with their two young kids. We got back from the airport that night. Ozzie checked his email and realized that our friends were coming not at the end of July, but the end of this week. I told myself I'd catch up with Mindy in a week or so. I mentioned to her maybe we could get together for lunch, on me, and I thought maybe I'd send her a gift certificate to one of the nice salon/spas in Boulder. I started getting my head around the next round of visitors. I had just said farewell to Ozzie's mom the day before.

My next mistake was not calling Mindy and checking in. I had assumed from the weird vibe at the airport that everyone wanted a break from each other, and I was continuing to feel overwhelmed.

Our British friends arrived a few days later. They literally got off the plane, and their youngest son vomited. It turned out their older son had been sick the day before. By the time they pulled into our driveway, he was throwing up again. We were all hoping it was, you know, "travel sickness". Nope. Over the next 5 days we one-by-one got the virus (except for Ozzie!) It was awful. It's been a very, very long time since I had a stomach bug that nasty. Two weeks later, I'm still feeling bouts of nausea. My daughter got sick on the way to a show at Red Rocks. My son and I were pretty much sick at the same time - very hard on both of us. He somehow willed the vomiting to stop for 10 hours and played a concert for the rock band camp he did that week. That was amazing. And he came home from the show and got sick again. I missed a bunch of days of PT, and ventured back to reality, PT and work mid-week.

The next day, I received an email from Mindy. It was angry - bringing my son was a mistake. He didn't have any stamina, he needed too much water, the money was a problem, he had bummed everybody out. "He and Zach are on different paths in life." She felt that it was best if he and Zach severed their friendship.

I felt slapped in the face. I immediately wrote back and apologized for being out of touch - I had not intended that and things had just happened unexpectedly. Honestly, it wasn't even like I was putting off doing something for her - I absolutely did not once think about it. "This is your brain on MS"? I don't know, I just know that I clearly messed that up. I wrote what I believed was a polite and compassionate response to what I thought was a very distressing email. I suggested that we get together to talk about whatever issues there were - certainly we could work through things.

She wrote back that there was nothing to talk about. She and Zach had talked and this is what they both wanted.

I felt stupid. I second-guessed every single thing I had said or thought or did or didn't do. I had to leave on a business trip to Portland, where I've been for a few days. I started out feeling like I had a dagger in my chest. I mean, I've had two, maybe three very difficult friendships in my life. But when there were problems, they were about me. This is about my kid. That's what makes my stomach hurt. I think deep down I know that he's ok - he will be ok in life. But this certainly stirs up all my fears for him. He's struggled with a lot in his young life - major speech problems, a learning disability, a low tolerance for frustration, tantrums. He's made huge strides - he's learned how to read, and he's gotten far better at managing his emotions. My absolute worst fears are that I have grievously failed my children. That I have not prepared them "right". And, of course I have failed them. it's certainly not all I've done - there's been some good things, too. I wouldn't know how to begin to be a perfect parent and it's hard to live with just "doing my best". But there is something deeper in this that is bothering me. I think it's that I know how much my son would be hurt if he knew what she wrote about him. My heart can hardly bear knowing it. To be honest, I cannot imagine writing such a thing to someone else. I have a way of naively going through the world sometimes, and then I let myself get so hurt by other people's actions.

I did send Mindy a nice gift certificate to the local spa. I don't know if that is her thing or not. I don't think I care. I need to close this chapter, I think. I'm certainly not going to say anything to my son. He has not mentioned wanting to see Zach, so I assume he has a sense for whatever's going on energetically. They'll be attending the same middle school next year - who knows how that is going to play out. Is there anything more terrifying than your kid starting middle school? I think one of the first posts I wrote for this blog happened on the day my daughter started middle school. I cried all the way to work that day. Funny how I was just diving into battling the school district over my son's learning disabilities that day, too.

I clearly made mistakes here. My choice on how to handle this situation would be very different from the way it played out. Earlier today i felt like maybe I had half a dagger in my chest. Tonight it feels like the whole thing again. My gut instinct is to never, ever take any risk again, ever. To not get close to people. Don't trust people, whatever I do. Do not, under any circumstance, befriend new parents at the middle school. Well, this will pass I guess. Meanwhile I'm popping Tums, Pepto-Bismol, acidolphilus, enzymes and anything else i can to get my stomach to stop hurting. For two days, I've been wondering whether I'm up for another 8 - 10 years of parenting. I'll gear up. I think it's the fear that's eating my stomach up.

ps. Portland is nice.

Elizabeth Gilbert perked up my life today

2010-04-26T16:37:00.000-06:00

Is Terry Gross messing with me?

2010-03-28T20:10:00.008-06:00

I have a little app on my iPhone called "Things". It's where I track things that come into my head so I remember them later. I like to listen to "Fresh Air" on NPR and invariably, Terry Gross gets me so into whatever she's talking about or whoever she's talking to, that I write it down in "Things".

One of those Things I wrote down a while ago was "Forgetting Sarah Marshall". Not actually a Judd Apatow movie, but certainly one of the cousins (Judd is an exec producer). It was written by Jason Segal, who I loved in "Freaks and Geeks" and really haven't seen much of since. Being in the midst of an MS exacerbation, I've been watching a fair amount of video. I tore through the first series of "Glee". I really loved it in the beginning, but then it started getting on my nerves. Possibly because I'm not sure I actually like any of the characters. I like a lot of the music performances, but also really hate some of them. It does do a great job of capturing that thing that drives me crazy about performers - they tend to be gluttons. "I want the lead! I want the lead! I want the lead!" Some musicians tend to have this unique and somewhat fatal combination of huge egos and very low self-esteem. "Look at me! Wait, why don't you love me??' I can say that because to some degree I am one of them. But it's not a quality that I like in myself or in others. Possibly, I hated the characters also because they are all far, far more talented than me.

So this weekend I downloaded 'Sarah Marshall' from Amazon. I watched the first half-hour or so late last night after my son fell asleep. It did not make me laugh. Really, not at all. I finally just fell asleep. I woke up this morning, and meditated for about 20 minutes. (I'm really trying to kick this episode behind me. So yeah, I'm resorting to fucking taking care of myself. To a certain degree, anyway.) At the end of the meditation, I was asking the universe to help me figure out what is next for me on the work front. My current work situation has been slowly imploding and it's pretty clear it is time to move on. It just feels so terrible at the moment. It's a good lesson for me in managing my own ego, and in letting go, but I am not liking it. So then I opened my eyes, and the first thought to pop into my mind was "Is Terry Gross fucking with me?? Did she really think this movie was funny? Shit! Is she just a shill, and is she leading me to ruin?"

It was my day to bring flowers to church for the service. I hadn't played in the band at church for many weeks, and I wasn't going to today, but I thought I'd bring the flowers and just stay for the service. I was feeling a bit better than I had the day before. Still, I could use a little of the divine. So I went. I walked in during the band rehearsal. The first thing I noticed was how beautiful the music sounded. 12-string guitar, drums, harmonies - really nice. My heart immediately was telling me how much I'd missed hearing the music, and also how much I'd missed playing and being a part of it.

When I walked into the sanctuary, I saw another woman at the keyboard. WOW - it was as if I walked in on my husband with another woman. 'OH MY GOD, THEY"VE REPLACED ME!'. My heart sank for a minute. I took a deep breath and just listened to the second half of the song - it really was beautiful, and I was smiling by the end.

The person behind the keyboard was the woman who plays the piano for the choir. She was playing for the choir anyway, so she just stayed up to play for the service. And I've always been ok with having another keyboard player around - it would be a good thing and could take some pressure off of me. But my reaction to seeing it, when I wasn't expecting it, was pretty funny. I later told the minister and lead guitar player Dave about it. He said "When I saw you, I did the same thing. I thought 'oh no, what is Trish going to think!!???" That made me laugh.

I thought church was going to be overwhelming and weird, but it was pretty ok. I really liked seeing my bandmates and I think they might really have missed me while I've been sick. I came home and played the piano for a while. The piano coda to "Layla" - something about that is very, very healing to play. I taught it to myself 30 years ago but haven't been able to remember all of it. So I went online to find the right chords and it kind of came back into my fingers. But my mind cannot remember it on its own. These days, I need my music. I think I'm ok with that. I saw Diana Krall on the Letterman show and she was using music.

Since I'd paid for it, I decided to watch the rest of the movie. My kids had both gone out with friends, my husband was off to London to see The Who perform Quadrophenia (hey, if I can't travel, then he should go and represent both of us. This is what you call acceptance. It's my birthday present to him.) So why not watch the rest of 'Sarah Marshall". A funny thing happened - around the time of the yoga class scene, I started laughing, and I started liking it. I was still skeptical. But first of all, Russell Brand totally won me over. He was adorable. And I really loved Mila Kunis - I think she's beautiful and liked her character. By the end of the movie, I was rooting for Jason Segal's character. Kind of like "Pineapple Express", I think it was a movie I wasn't sure I was supposed to like, but I did. But then I am sometimes a sucker for the Farrelly brothers/Judd Apatow/Ben Stiller ilk. My gosh, even JONAH HILL make me laugh. His imitation of Russell Brand was hilarious.

Ok, Terry, you're off the hook. I'm sorry I doubted you!! I hope you'll forgive me.

Tomorrow morning is the first senior management meeting at work that I don't think I'm supposed to go to now. It may be the right thing to just work from home. The worst thing is, I still have this shred of hope that something will change.

This particular MS exacerbation has brought with it some really horrible depression. I've resorted to using major doses of caffeine to help lift me out. The work thing is not helping any. I'm feeling a little bitter that for my entire life since a young age, I have had wrestled with recurring depression, and later, recurring MS. What the fuck? I'm working on the acceptance and getting away from the freaking self-pity.

I'd really like to figure something worthwhile I can do for the world, or my little piece of it, with the time I have left.

The High Road

2010-03-11T10:22:00.004-07:00

I am being haunted by this beautiful song called "The High Road". For months now. You can hear it hear:http://www.brokenbells.com/home.html. If you click on the "lyrics" box in the lower right corner, you'll see the lyrics as they're sung.

I don't know what it's about. Suicide? Drugs? War? I just think it's beautiful - the part I listen to over and over is the end - "It's too late to change your mind, you let loss be your guide". The harmonies slay me. Broken Bells is the producer Danger Mouse and the lead singer from The Shins, James Mercer.

I'm not doing so well right now. Having a bit of an MS flare-up - foots not working, arm's not working and the fatigue is back. I skipped my LDN meds for about 5 days, so maybe I did it to myself. I'm back on it, and taking it in the morning instead of at night, to try and avoid the fucking insomnia it causes me.

As a blogger friend of mine said a few months ago, I try hard not to complain. But I'm gonna, right now. I know this will pass, but man, I'm not feelin it.

At the moment, I'm tired of the fucking struggle. Everything is a stuggle, but MS is definitely one. Keeping my house - even just the kitchen - seems impossible to me now. I can't do it. I can't take care of my kids properly. Things at my job, even though it is allegedly part-time, are HORRIBLE. Really horrible. I've never had such at nightmare at work. I have an ounce of integrity left and I'm holding on to it for dear life. I owe the IRS $14,000 this year. I need a bigger car to fit teenagers in. I'm exhausted. I sound like Richard Lewis :-)

Look, yes, I know - I'm lucky in so many ways. I have a job, I have beautiful, loving children, I have some great friends. Jon Stewart exists. It doesn't feel right to complain.

What am I going to? Ok, I'm going to call a tax attorney, hire someone to clean my house, and try and get past this goddamn flare-up. It won't always feel this crappy.

And listen to Broken Bells.

Feed the pretty little fish

2010-03-03T23:22:00.002-07:00

The littlest Who fan?

2010-02-07T22:47:00.003-07:00

This is a coworker's son, with Pete on the big screen.

I Can't Stop My Leg

2010-02-03T19:40:00.004-07:00

I was a huge fan of Robert Klein back in the day. I can't find any video online from his great " leg" routine, so this one will have to do.

I can't stop my leg from hurting today. I hope it stops tomorrow or the next day. I had an MS flare this past weekend, after a urinary tract infection. I felt it for about 3 days, then I felt better. Then today my right leg was weird - my right side is typically my "problem side". As my friend Paul (aka Captain Literal) said, "so, trrish, apparently you literally have a bad side"... And as the day went on, I felt worse and worse. I don't know if the leg thing is triggered by MS or not. I suspect yes, though it doesn't really matter. But let's appreciate a three-day episode - that is pretty good! It has been so much worse in the past.

I skipped band practice tonight due to not having the resilience to go, plus my son (the strep-throated Adrian, a rare bird that has been making frequent appearances in my household) is sick with strep. I don't like missing band - I like playing. I wish we could practice on the weekends during the day. MS and late night band practices every week don't go well together...

I've never watched the George Lopez show before, but it just came on, and I realize that the theme song is "Low Rider", by War. Now that's funny.

I am temporarily tired of taking care of people and things. I'd like to have a few days where I don't have to. I am lucky that sometimes Adrian and Ozzie go skiing and I get a little time to myself. I suspect that goes hand-in-hand with not feeling well. It's hard to take care of others when I'm not on my game.

So this weekend, The Who are playing half-time at the Super Bowl. I have nothing but anxiety! Will everyone think they are too old? Will they suck? Will Pete blurt out something ridiculous? Personally, I find him charming, but he has been known to say some outlandish things. The last time they played before a huge, national audience was The Concert For New York. They pretty much kicked ass, even though Roger had a cold, and did all of us fans proud. Introduced by self-proclaimed Who fanboy John Cusack, they expressed the aggression that night that that crowd of New Yorkers - firefighters, cops and just plain citizens needed to feel. I remember feeling the same way before that show that I do now. Of course, we don't have Entwistle now.
I know once they are on stage, I will be so happy to see them, I will stop caring about what anybody else thinks. I'm so lucky that the band I picked "for life" is still out there playing.

I just don't think you're ever too old to rock.

The Who, What, When, Where, Why and How

2010-01-27T23:35:00.010-07:00

A Facebook friend (who I knew in kindergarten!) asked me to explain to him the who, what, where, when, why and how of my tattoo. I realize that it is a pretty small group of people who might be in the tribe that I'm in - feeling so passionate about a band's music to actually get a tattoo. So, if I have to explain it...is that person really gonna get it? I don't know.

But I'm willing to give it a go. This is what I wrote to him:

Why: I love Pete Townshend's music. It touched me deep in my soul when I was around 16 and just grew from there. He's a kindred spirit, and I see eye to eye with him on spiritual matters. His music just has deep meaning for me. The Who and their music came to be something I had so much passion for - I have seen them in concert so many times I've lost count.

Almost 10 years ago, I was having a particularly troubling MS attack and was numb from my knees up to my shoulders. I thought, gee, this might be a good time to get that Who tattoo I always wanted. It still hurt like hell! At the time, I was in the middle of a lot of fear, not knowing how MS was going to play out. So I did some things that were meaningful to me, like the tattoo, but that I might not normally have done. The MS thing kind of gave me the "what the fuck" energy I needed to do them. The reason for the tattoo was that it was something I felt so passionate about, it made me feel glad to be alive and I liked to be reminded of that.

Where: It's above my right hip. I'll post a picture (and Citizen K - this is for you! :-)

When: About 10 years ago.

How: Boulder tattoo parlor

I love it and I have never regretted it. Now, if Pete and Roger totally blow it at the Superbowl in a few weeks, I might have to rethink things!

....NOT

My World Health Organization tattoo

2010-01-23T22:29:00.005-07:00

So I had an annual exam the other day. My doctor is a nice, very kind woman, who likes to make chit-chat during the exam, which I HATE. I hate it all - the exam, the chit-chat, going there at all.

So, I'm lying down, and she's checking, uh, various things. She moves the sheet around and notices my tattoo. Somehow, this has not come up in the past few years. I'm not sure where she was born - she has a kind of Indian or Pakistani type of accent. Anyway, she says "So....you have an interest in the World Health Organization?"

I am not making this up.

I say "No, no, this "The Who" is a band. You know, a rock band..."

I don't think she does know. Her kids are perfect and play competitive soccer in which they travel to other states and both she and her husband are dr's. I mention that just because I don't feel like we're from the same tribe, if you know what I mean...

I think I need to find a new dr.

She was a little sheepish about it, which was cute. To be fair, I'm not sure how much I can like anyone whose job is basically to remind me how old I'm getting and touch me in places I'd prefer they didn't...

See, I told you sociology was interesting!!

2010-01-18T19:21:00.001-07:00

Professor Is a Label That Leans to the Left

By PATRICIA COHEN
Published: January 17, 2010, The New York Times

The overwhelmingly liberal tilt of university professors has been explained by everything from outright bias to higher I.Q. scores. Now new research suggests that critics may have been asking the wrong question. Instead of looking at why most professors are liberal, they should ask why so many liberals — and so few conservatives — want to be professors.

A pair of sociologists think they may have an answer: typecasting. Conjure up the classic image of a humanities or social sciences professor, the fields where the imbalance is greatest: tweed jacket, pipe, nerdy, longwinded, secular — and liberal. Even though that may be an outdated stereotype, it influences younger people’s ideas about what they want to be when they grow up.

Jobs can be typecast in different ways, said Neil Gross and Ethan Fosse, who undertook the study. For instance, less than 6 percent of nurses today are men. Discrimination against male candidates may be a factor, but the primary reason for the disparity is that most people consider nursing to be a woman’s career, Mr. Gross said. That means not many men aspire to become nurses in the first place — a point made in the recent Lee Daniels film “Precious: Based on the Novel ‘Push’ by Sapphire.” When John (Lenny Kravitz) asks the 16-year-old Precious (Gabourey Sidibe) and her friends whether they’ve ever seen a male nurse before, all answer no amid giddy laughter.

Nursing is what sociologists call “gender typed.” Mr. Gross said that “professors and a number of other fields are politically typed.” Journalism, art, fashion, social work and therapy are dominated by liberals; while law enforcement, farming, dentistry, medicine and the military attract more conservatives.

“These types of occupational reputations affect people’s career aspirations,” he added in a telephone interview from his office at the University of British Columbia. Mr. Fosse, his co-author, is a Ph.D. candidate at Harvard.

The academic profession “has acquired such a strong reputation for liberalism and secularism that over the last 35 years few politically or religiously conservative students, but many liberal and secular ones, have formed the aspiration to become professors,” they write in the paper, “Why Are Professors Liberal?” That is especially true of their own field, sociology, which has become associated with “the study of race, class and gender inequality — a set of concerns especially important to liberals.”

What distinguishes Mr. Gross and Mr. Fosse’s research from so much of the hubbub that surrounds this subject is their methodology. Whereas most arguments have primarily relied on anecdotes, this is one of the only studies to use data from the General Social Survey of opinions and social behaviors and compare professors with the rest of Americans.

Mr. Gross and Mr. Fosse linked those empirical results to the broader question of why some occupations — just like ethnic groups or religions — have a clear political hue. Using an econometric technique, they were then able to test which of the theories frequently bandied about were supported by evidence and which were not.

Intentional discrimination, one of the most frequent and volatile charges made by conservatives, turned out not to play a significant role.

To understand how a field gets typecast, one has to look at its history. From the early 1950s William F. Buckley Jr. and other founders of the modern conservative movement railed against academia’s liberal bias. Buckley even published a regular column, “From the Academy,” in the magazine he founded, The National Review.

“Conservatives weren’t just expressing outrage,” Mr. Gross said, “they were also trying to build a conservative identity.” They defined themselves in opposition to the New Deal liberals who occupied the establishment’s precincts. Hence Buckley’s quip in the early 1960s: “I’d rather entrust the government of the United States to the first 400 people listed in the Boston telephone directory than to the faculty of Harvard University.”

In the 1960s college campuses, swelled by the large baby-boom generation, became a staging ground for radical leftist social and political movements, further moving the academy away from conservatism.

Typecasting, of course, is not the only cause for the liberal tilt. The characteristics that define one’s political orientation are also at the fore of certain jobs, the sociologists reported. Nearly half of the political lopsidedness in academia can be traced to four characteristics that liberals in general, and professors in particular, share: advanced degrees; a nonconservative religious theology (which includes liberal Protestants and Jews, and the nonreligious); an expressed tolerance for controversial ideas; and a disparity between education and income.

The mismatch between schooling and salary complements a theory that the Harvard professor Louis Menand raises in his new book “The Marketplace of Ideas.” He argues that the way higher education was structured by progressive reformers in the late 19th century is partly responsible for the political uniformity of today. In the view of the early reformers, the only way to ensure that quality, rather than profit, would be rewarded was to protect the profession from outside competition. The tradeoff for lower salaries was control; professors decide who gets to enter their profession and who doesn’t.

The tendency of people in any institution or organization to try to fit in also reinforces the political one-sidedness. In “The Politically Correct University: Problems, Scope and Reforms,” a collection of essays published by the American Enterprise Institute, a conservative research group, Daniel B. Klein, an economist at George Mason University in Virginia, and Charlotta Stern, a sociologist at Stockholm University, argue that when it comes to hiring, “the majority will tend to support candidates like them in the matter of fundamental beliefs, values and commitments.”

Other contributors to the book, Matthew Woessner and April Kelly-Woessner, who are husband and wife, also found that conservatives are less interested in pursuing advanced degrees than liberals.

Mr. Gross and Mr. Fosse have not yet published their results, but experts in the field have vetted their research and methods. Michèle Lamont, a Harvard professor and the author of “How Professors Think,” said, “I think their paper is very, very sophisticated and quite original.” She added that the theory better fits some disciplines, like literature and sociology, than others, like business or economics.

Mitchell L. Stevens, a professor of education at Stanford University, who also reviewed the research, finds the theory promising. Choosing an occupation is part of fashioning an identity, Mr. Stevens said, noting that people think of themselves as a “corporate type” or a free spirit, which is why you might find highly educated graduates working as bartenders instead of in an office.

He added that the gender-typing of a field like physics might also partly explain the dearth of women in it, another subject that has provoked heated disputes.

To Mr. Gross, accusations by conservatives of bias and student brainwashing are self-defeating. “The irony is that the more conservatives complain about academia’s liberalism,” he said, “the more likely it’s going to remain a bastion of liberalism.”

Sponsors of the Rush Limbaugh radio program

2010-01-17T15:51:00.006-07:00

We've gotta start speaking out to the people who pay for it. Let them know you don't think they should pay for his ridiculous comments.

Lending Tree: 704-541-5351 http://www.lendingtree.com

Life Quotes: 800-670-5433

e-Harmony: 626-795-4814; Fax: 626-585-4040 eharmony.com
rt@eharmony.com

Inverness Medical: 800-899-7353  51 Sawyer Road, Waltham, MA 02021

OnStar: 800-947-AUTO
(GEICO)

Hotwire : 877-468-9473  333 Market Street, Suite 100, San Francisco, CA 94105 hotwire.coming@hotwire.com

CARBONITE, Inc.: 617-587-1100  177 Huntington Avenue, Boston, MA 02115 carbonite.com nd@carbonite.com  Direct Dial Office: 617-587-1100 EXT:1115

Select Comfort: 763-551-7460  d/b/a Sleep Number Bed: 800-438-2233

The Neptune Society of Northern California  Stewart Enterprises  12070 Telegraph Road, Santa Fe Springs, CA 90670

Oreck Corporation: 800-289-5888  100 Plantation Road, New Orleans, Louisiana 70123

Smart & Final, Customer Relations  PO Box 512377, Los Angeles, CA 91001-0377

Mid-West Life Insurance Co. Tennessee: 800-733-1110  9151 Grapevine Hwy, North Richland Hills, TX 76180

Mission Pharmacal (Citrical): 800-531-3333  P.O. Box 786099, San Antonio, TX 78278-6099

LegalZoom  800-773-0888; Fax: 323-962-8300

Blue-Emu: 800-432-9334

Lumber Liquidators: 877-645-5347

Citrix Online (GoToMyPC)  6500 Hollister Avenue, Goleta, CA 93117  Phone: 805-690-6400; Fax: 805-690-6471 citrixonline.com

American Forces Network  Contact Us: MyAFN.net

This was originally posted here.

Ebert to Limbaugh

2010-01-15T15:57:00.000-07:00

/ / / January 14, 2010

To: Rush Limbaugh
From: Roger Ebert

You should be horse-whipped for the insult you have paid to the highest office of our nation.

Having followed President Obama's suggestion and donated money to the Red Cross for relief in Haiti, I was offended to hear you suggest the President might be a thief capable of stealing money intended for the earthquake victims.

Here is a transcript from your program on Thursday:

Justin of Raleigh, North Carolina: "Why does Obama say if you want to donate some money, you could go to whitehouse.gov to direct you how to do so? If I wanted to donate to the Red Cross, why do I have to go to the White House page to donate?"

Limbaugh: "Exactly. Would you trust the money's gonna go to Haiti?"

Justin: "No."

Rush: "But would you trust that your name's gonna end up on a mailing list for the Obama people to start asking you for campaign donations for him and other causes?"

Justin: "Absolutely!"

Limbaugh: "Absolutely!"

That's what was said.

Unlike you and Justin of Raleigh, I went to Obama's web site, and discovered the link there leads directly to the Red Cross. I can think of a reason why anyone might want to go via the White House. That way they can be absolutely sure they're clicking on the Red Cross and not a fake site set up to exploit the tragedy.

But let me be sure I have this right. You and Justin agree that Obama might steal money intended for the Red Cross to help the wretched of Haiti.

This conversation came 48 hours after many of us had seen pitiful sights from Port au Prince. Tens of thousands are believed still alive beneath the rubble. You twisted their suffering into an opportunity to demean the character of the President of the United States.

This cannot have been an accident. A day earlier, in a sound bite from your show, you said "this will play right into Obama's hands. He's humanitarian, compassionate. They'll use this to burnish their, shall we say, 'credibility' with the black community -- in the both light-skinned and dark-skinned black community in this country. It's made-to-order for them."

Setting aside your riff on Harry Reid, consider what you imply. Obama will aid Haiti to please African-Americans. Haiti has lost untold thousands of lives. One third of the population has lost its homes. Countless people are still buried in the rubble. Every American president would act quickly to help our neighbor. You are so cynical and heartless as to explain Obama's action in a way that unpleasantly suggests how your mind works.

You have a sizable listening audience. You apparently know how to please them. Anybody given a $400 million contract must know what he is doing.

That's what offends me. You know exactly what you're doing.

http://rogerebert.suntimes.com/apps/pbcs.dll/article?AID=/20100114/OPINION/100119985

Low-Dow Naltrexone Case Studies

2010-01-12T16:22:00.003-07:00

A interesting PDF with case studies of patients taking LDN, including many MS cases. Also Crohn's, Fibro and RA.

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

2009-12-29T22:59:00.012-07:00

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.

2009-12-22T23:20:00.001-07:00

My kooky little Christmas hat

2009-12-19T21:28:00.004-07:00

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.

2009-12-19T21:15:00.001-07:00

It was fun.

Patients Like Me, or not

2009-12-19T07:12:00.005-07:00

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!

2009-12-18T23:28:00.002-07:00

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

2009-12-18T23:26:00.002-07:00

Gingerbread Mr. Bill - Ho Ho Hooooooonoooo!,

2009-12-18T23:25:00.002-07:00

Adrian's A

2009-12-18T23:24:00.002-07:00

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

2009-12-18T20:16:00.004-07:00

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

2009-12-18T20:14:00.001-07:00

Shmushing, shaping and cutting

2009-12-18T20:13:00.000-07:00

Gingerbread cookies with Adrian

2009-12-18T20:11:00.000-07:00

We Have Got to Get it Together

2009-12-16T20:26:00.007-07:00

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"

2009-12-08T23:49:00.017-07:00

"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!!

2009-12-08T15:54:00.015-07:00

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.

2009-11-26T20:13:00.000-07:00

2009-11-26T20:12:00.000-07:00

Thanksgiving at our house

2009-11-26T20:06:00.001-07:00

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

2009-11-24T16:37:00.006-07:00

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 :-)

At Outside the Breadbox, Gluten-free bakery in Colorado Springs

2009-11-24T13:00:00.000-07:00

Hey You Guys!!!

2009-11-17T23:52:00.004-07:00

MS'ers, are you using LDN?

I'm considering making the move to LDN, having recently come off of Tysabri. My last infusion was 49 days ago. I'd love to hear your experience with LDN - good and not-so-good. What are the trade-offs you've had to make, if any? I'm especially interested in hearing about any improvements you've seen, any side effects you've had, and whether you are satisfied with your decision.

Please post here on the blog, or send me an email if you are more private.

thanks!

Trish

"Hey Mom?"

2009-11-14T22:40:00.010-07:00

My son came in from running through the snow after being at his friend Sean's house.

I made him some food. We sat down to watch a little TV.

"Hey Mom?"

Really long pause.

"A lot of people have trouble understanding me. Is that going to go away?"

Another pause.

"It's hard, because inside my head, it sounds exactly the way it's supposed to, to me. "

Ouch.

He started speech therapy when he was 3. He's 11 now. They kicked him out of speech at public school a year or so ago. His speech wasn't bad enough to qualify anymore. I was shocked. "Seriously?" I had asked. There were six people from the school there. "Can anyone in this room understand him all the time? Because I can't, and I'm his mom."

He has resisted doing any private speech work outside of school. Which I really understand. He's already got a serious learning disability and uses so much energy just getting through the school day. Extra speech work adds a lot to his day. But I guess it's time for us to consider it more seriously. Which is how I responded to him.

While he's made huge progress in his reading and writing, his
frustration and anger issues are increasing. And they are becoming
increasingly hard for me to manage. And it is not just me. His teacher
at his Derek Zoolander school has been having trouble with him. And
our long time babysitter for the past 8 years left because she
couldn't handle his anger. This has just been breaking my heart.

I came across an idea that I am going to pursue to help him with the
emotional stuff. It's an alternative therapy tool called EFT. I did
it about 5 years ago when I was at Canyon Ranch in the Berkshires. It
helped me with a few things. I have a friend with some experience
with it. I had lunch with him yesterday, and he recommended a woman here in Boulder. I had been coincidentally been getting her e-newsletter for a few months, as I had stumbled across
her website myself while researching a few things. Things just seemed to be converging. So I've emailed her about doing a consultation with Adrian and me.

I've been through a lot with MS, and with Adrian, and I know enough
not to get my hopes up too high. I also trust my gut sense. So, I'll
allow myself some small hope around EFT helping Adrian.

I'll do what I always do -"the research"- and find someone to work with him on speech. We'll give the EFT a shot. And we'll do whatever comes after that. Another thing I did was get back in touch with the special ed staff at his public school. I need a new IEP for his emotional stuff and to get him back in the spec ed pool in time for middle school. They kicked him out of special ed when we put him in the part-time Zoolander school.

Meanwhile, I'm doing my information gathering on my next post-Tysabri strategy for MS. For certain I'm staying on the diet (see the book "The MS Recovery Diet"). In a week I'm going to go see 'Andrea Cohen, Holistic Neurologist' to talk about LDN (low-dose Naltrexone. Thanks for the nudge, Sherri!) and any other ideas she has. She's helped me so much with my various body issues. I function much better on a day-to-day basis thanks to her.

I kind of get that this is what life is. Problems come and go, and come again. And we strategize.

I'm glad that life also offers some other things. Like the gluten-
free, dairy-free, soy-free pumpkin pie I found at Vitamin Cottage
yesterday. Thank you, Deby's Gluten Free Bakery of Denver. And like
playing "Let It Be" as an interlude tomorrow at church. My church
band gig is really feeding my soul. Having a regular gig is pretty
damn good. And how the Cartoon Channel shows one episode of the UK version of 'The Office' in the wee hours every Saturday morning, once a week.

It's the hard, and the good, one step at a time.

2009-11-07T19:03:00.002-07:00

After a discussion about rock films on a Who list that I moderate, I decided I needed to get off my butt, well, on my butt, and catch up on some films I hadn't yet watched.

First up - Metallica's "Some Kind of Monster".

Going into this film, I was a bit like Rachel Fuller (Pete Townshend's partner) with The Who. I could name a precious few Metallica songs. I have a couple of coworker friends who are Metallica nuts, and I know they have a large fan base.

I had also just finished watching Season 1 of "In Treatment" on DVD. It's an
HBO series about therapy. It is SO up my alley - I love it. Can't wait for Season 2. ( I sometimes wish I was willing to shell out the $$ for digital cable and HBO but I'm not. I always hear our fellow Relayer Duke's voice echo'ing in my head .... "I realized the key to life was not having cable TV".) So I am
deep into the therapy mindset these days.

"Some Kind of Monster" was a great mix of relationship and thrash. Not knowing the band members beforehand, I didn't have much in the way of preconceived ideas about them, other than I figured I might not relate to them.

I was surprised at many things. By the end of the film I loved the band members and the band. I now have huge respect for the process that they went
through to make an album (St. Anger) at a very difficult time in the band's career. Their bass player quit the band because it wasn't cool for him to do a solo project. That was issue was a glimmer into a fundamental problem the band,
or at least the two main players/songwriters - Hetfield and Ulrich - had - they needed to control everything. It was during this time that Ulrich went after Napster, alienating many of his fans.

The film gives us an extremely intimate look into the process of being a band. Being in two of them myself, I could really relate to it. It is so very much like a marriage. Painfully so. I have so much respect for them for allowing this record of their very intimate and serious process to come out.

I appreciate the music of Metallica much more than I did before. While it is not my music of choice, I can at least now intellectually appreciate everything they put into it. And I think I might have a small crush on Lars Ulrich. I have huge respect for Hetfield, Ulrich and Kirk Hammett.

I recommend this film to those who are interested in the process of making a rock album, to those who appreciate the complexity of human relationships and communication. If, like me, you appreciate both, you will be very satisfied with this film.

Next up: "The Boat That Rocked", also now known as "Pirate Radio".

I'm breaking up with Tysabri!

2009-11-04T19:40:00.010-07:00

I was supposed to have my 27th Tysabri infusion today. I happened to have an appointment with my neurologist the hour before my scheduled infusion. I had a few things on my list of things to talk about. Tysabri was the first - there has been a lot of activity in the last few months - an increased number of Tysabri patients who developed PML, and a study that showed that the longer one is on Tysabri, the more likely that one will develop PML. I had read that there was a test they could do to determine if you have the virus that causes PML, which would indicate whether continuing on Tysabri was the right thing for you.

I could see on his face as I talked that he was not thinking what I was. I was hoping I could do the test for the virus, and that would be that, and I'd continue along on my merry way with Tysabri.

He told me that the recalculated odds for PML for Tysabri users over 24 infusions are down to 1 in 600 - it started out as 1 in 1000 for everyone after the trials. The PML cases to date have occurred after 24 infusions. The odds have not changed, or have likely improved for those on their first 24 months of Ty. Because they are so uncomfortable with these odds, the three MS neurologists at my clinic (University of Colorado Hospital Rocky Mountain MS Clinic) have decided to take patients off Tysabri after infusion #24. They are going to the big gathering of MS neuro's in NY or London next week. They are supposed to coming up with a common protocol recommendation at those meetings.

He says he feels the risk of the Tysabri-withdrawal exacerbation is less worrisome than the risk of possible post-24-infusion PML with Tysabri. We talked for quite a while about it.

I figured it was coming. I had told myself that I would stay on it for another 6 months. My own intuition was starting to speak up and say "I think it's time". But they are coming out with this a little earlier than I expected. I certainly didn't expect it today. His recommendation is to do a one-day course of preventive steroid infusion once a month for a few months to combat the risk of the Tysabri-withdrawal exacerbation. Then he would like me to use Rituxan. I know precious little about Rituxan, so I've got some reading to do. Apparently the efficacy of Rituxan is equivalent to Ty.

Have I mentioned I hate steroids? Yes, I have.

Still processing all of it. Tysabri has been great for me and I'm a little sad and scared to let go of it. ('Tysabri has been bery,bery good to me...' ) No drama, though. It just means I go back onto the roller coaster of trial and error MS meds until the next great thing comes along. My belief is that, because I am doing the MS-Diet, I stand a much smaller chance of having the withdrawal exacerbation. Apparently those tend to happen within 90 days.

In the end, I will likely do what he is suggesting with the steroids. I think one-day is tolerable. I do not tolerate the 3 or 5 day course. I will at least try it one time. I really, really, REALLY do not want to go backwards with MS. I have been there, done that, and I am willing to do a lot to avoid it. I don't know about Rituxan. I'll read about it and see what my gut tells me. I feel like the diet is really the thing that has so dramatically decreased my episodes, so I don't plan to rush into any other drug until I feel sure. I have gone to 4 neurology MS clinics over the last 11 years, and as far as western-medicine-type stuff goes, I trust this clinic. While I was there, we got another opinion from Tim Vollmer, another neurologist in the clinic. He agreed. It might be interesting to go to the clinic across town and see what they say, but because my gut was telling me to go this way anyway, I'd rather invest the time figuring out my next plan.

Thanks, Tysabri. You helped stopped my progression for two years!!

trrish and Dagny's excellent adventure - The Black-Eyed Peas, U2 and the Beatles Love.

2009-10-27T21:16:00.006-06:00

My experience at the Las Vegas show was colored by the situation with the seats. I was going with a civilian, if you will; my 15 year old daughter. It takes her so long to straighten her hair that we were lucky to get to the show at all (just kidding, Dagny :-) I knew that GA tickets weren't gonna work for us, so I went with seats. The seats I bought were, according to the original seating chart I saw, non-GA seats in front of the stage, 7th row. It turned out they were really in back of the stage. But, it was supposed to be "360" and everything I had read said the stage was going to rotate around so that the behind the stage seats were going to be as good as anywhere else. So I kept them.

Not true. I don't know if their 360 stage didn't meet their expectations or if there was just bad information out there. They rotated Larry and the drumkit twice for the equivalent of maybe a song. Bono come back to see us three times, for about 10 seconds each time. I think the Edge came back three times as well. But that isn't what you really want. You want to see the band, playing together. Or at least I do.

One of the things they did was put all the sound equipment in the legs of the'big claw' stage that they built. So that was supposed to open up the back of the stage. But it didn't really - if Bono was singing from the front of the stage, you couldn't see him from behind it. Really, all you could see was the drummer. The video screen was 360, I'll give them that.

It was a good show - The Black Eyed Peas were entertaining. This was only the 3rd show, I think, that they had done with U2. They certainly were not used to

the stage and taking advantage of it. Taboo had to drag Fergie down to wave to our section at the very end of the show.

Bono was funny and the three times he did come back to see us, it was thrilling. He has star power, and you can feel it from 50 ft away, even if you are Dagny and don't know the band that well. They incorporated some things like an astronaut from the space station reciting some lyrics, and the usual ONE organization promo, etc. There were some good musical moments - 'Stand by Me' and 'Viva Las Vegas' in the middle of 'Still Haven't Found What I'm Looking For'. Complete with Elvis impersonation. David Bowie's "Space Oddity" had kicked things off. We enjoyed being there.

I get what they were trying to do with the 360 thing. I don't think they achieved it. I allow for the possibility that for others, it might have been a different experience. It was very interesting to see the stage setup closeup -we were very close to the back of the stage, and the back staircase. All 4 members of U2 made their final exit from the stage down that staircase, so we got a really good glimpse of them at that moment. That was very cool.

Afterwards, we stayed around and watched all the hired local labor, regular crew and trucks start the breakdown. What an enormous task. They had something like 150 trailer trucks.

I don't know what U2 fans are saying - I don't frequent their boards. I wonder if my opinion is completely a minority one. I guess I don't feel like the tradeoff was worth it. For the cost, the environmental impact, etc, I don't know if there was enough benefit. It didn't seem that much different to me than the U2 show Ozzie and I saw in Denver a few years ago. For the past few tours, they have paid a lot of attention to getting themselves out into the crowd and taking turns performing for behind the stage. They can sell more tickets with this setup, although I'm not sure those extra ticketholders are as happy as others. I have a sense that, with the low sales of their recent album, they are trying to boost their sales and popularity back up. Which is fine.

Sam Boyd Stadium is kind of a nightmare. It's the UNLV football stadium. It took about 2 hours to get out of the parking lot after the show. No exaggerating.

All that said, Dagny and I had a good time together. I remember swearing off stadium shows way back in the late 80's (hmmm, I wonder what tour might have prompted that...). I think I have re-sworn off of them, again. It's a good reason to keep on finding 'smaller' bands and artists that I like - Wilco, Fountains of Wayne, the Dead Weather, etc. Seeing a band in a little joint or at Red Rocks or even an arena is much more satisfying somehow.

One of the other things we did while we were there was see the Beatles Love show. That was unbelievably great. I can't believe it has taken me three years to get to see it. I guess I was originally put off by the high ticket prices. I learned that you can get discounts, and that there is not a bad seat in the house. I will be going back to see it again and again. I absolutely loved it. The sound system is flawless - it's the sound system I always was trying to create in my living room with my Vandersteens and Magnaplaners but never quite did. If you are into the Beatles, you need to see that show if you have not. If this was a Beatles' list, I'd write another 6 paragraphs about it. I had a pretty strong emotional reaction to the show. What a great job they did putting it all together.

Part of my 50th birthday trip to Vegas was about "trrish making peace with Las Vegas".

I had wanted to make my peace with Vegas because of a number of things. One being 2002, of course. I went there in June of 2002 for the first night of the Who tour. John

Entwistle died the night before the show. There was a wealth of emotions during that particular trip - some pretty heavy experiences that weekend. Subsequent trips to Vegas were hard

because of the ghosts of that 2002 trip. That weekend had been traumatic, and yet also full of connection. I was there a few times for work conferences after 2002. I hated being there without Who friends. It felt lonely. No one I was there with could really understand that. I stayed at the Hard Rock once or twice just to maintain that connection with the past.

I hadn't stopped drinking completely, yet, and had some rough times because of that. I won't go into the gory details, but there are some bad memories. I decided I hated Las Vegas.

But there are also some very good memories. I felt like I needed to come full circle and heal - make my peace with it. This time, I got up the first morning and drove over to Trader Joe's, my favorite store in the world. I was really happy to be there. I realized that I don't hate Vegas. What I hate is walking along the strip, particularly at night. There's too much crass selling of sex, and too many drunk guys, and drunk idiots in general. Granted, I used to be one

of the drunk idiots. I suppose I don't like being reminded of my bad times. I'm not a gambler, and I don't like the casinos floors - they are otherworldly to me - the sounds of the machines, the lack of natural light, the feeling that it is always 2 in the morning. I'm on a strict diet because of MS, and I can't eat 90% of the food that is around.

So I made a point to get outside and do normal things, find food that I can eat, be out in the sun. Went to the older part of downtown to meet up with my brother, who drove out from LA. That part of town is a little more manageable for me. He came to see the Beatles show with us, and we all ate dinner at one of our favorite restaurants - Mon Ami Gabi at "Paris." You haven't been to "Paris" until you've gone with my brother, Eric, who does a great faux French accent, in honor of being in Faux Paris.

Being there with Dagny was healing. It was helpful to talk through a lot of things with her. I was able to embrace the drunks, not literally, happily, and the other stuff

and look past it. Las Vegas is a town full of the best and the worst of human behavior. Watching drunk guys make cat calls at my daughter was challenging! My daughter is very wise and I enjoyed spending so much time with her.

It all led up to seeing Love and experiencing all the passion that went into it. For me, it felt like the next step in the evolution of what the Beatles were. This show was meant to exist, and it gives the music another life. George and Giles Martin were brilliant with what they did with the music. And the Cirque people were equally brilliant with what they did with the sound, the staging, choreography, lighting and props. And the theater!! It's the former Siegfield and Roy theater, completely redone.

It's gonna be hard to keep me away from that show. If you are looking for me in Boulder and can't find me, you might check the Mirage hotel....

trrish

The Revolution Lounge

2009-10-25T01:17:00.001-06:00

Dagny, Uncle Eric & trish

2009-10-25T01:15:00.001-06:00

The reason I needed to come to Las Vegas

2009-10-25T01:13:00.001-06:00

Mission Accomplished

2009-10-24T16:44:00.000-06:00

Getting closer

2009-10-24T15:57:00.000-06:00

Circus! Circus!

2009-10-24T15:54:00.001-06:00

Angelic Dagny in line for the not-so-angelic Criss

2009-10-24T15:51:00.000-06:00

Some of the hard core 'loyals'

2009-10-24T14:31:00.000-06:00

The scene at the Criss Angel signing

2009-10-24T14:17:00.000-06:00

U2 Stage

2009-10-24T00:55:00.000-06:00

2009-10-22T12:02:00.000-06:00

2009-10-22T12:01:00.000-06:00

2009-10-22T12:00:00.000-06:00

Appreciating Utah

Clearing Vail Pass

2009-10-21T17:18:00.000-06:00

Trip Diary

2009-10-21T15:41:00.001-06:00

Shortest train 0-9!

Report from the Fountains of Wayne/Aimee Mann show.

2009-10-15T01:06:00.002-06:00

I was on the rail, where I like to be for bands that I love. Adam and Chris from FOW were fun, funny and basically gave me the best 45 minutes I've had in a few months. It was just the two of them (there's usually 4) doing an acoustic show. Adam played a number of songs on the grand piano that was there for Aimee's set, which was just so lovely. These two write some of the best pop songs I've ever heard. Adam is the guy who wrote much of the music for Tom Hank's film, "That Thing You Do", which I love, and he also wrote the song "Pop! Goes My Heart" from that movie I can't remember the name of. Chris is a depressive with a great sense of humor and an ear for a hook. They played a slow, ballad-y version of their one hit, "Stacey's Mom", and also did some great improv stuff with some 70's radio hits - Foreigner, Pink Floyd, Peaches & Herb. Hilarious. I love them. I lurve them. I luff them.

The guy standing next to me talked me in to staying for Aimee - I'm really glad I did. She had so many keyboards! - she had two backup musicians, both keyboardists who also played a few other things. There was a Korg, an actual Fender Rhodes, a Roland, something that might have been a Mellotron, a few synths and a grand piano. I was in keyboard heaven. They did their own set list for the first half of the show, and then took requests for the rest of the night. They played for two hours. They used music and music stands! It was really, really fun and just some beautiful music. I'd seen her before but this was really different. I don't know that many musicians who can throw open their entire catalog for requests and just run with it. Really impressive.

Man, I need to get out more.

How did I get here?

2009-10-01T21:36:00.006-06:00

There used to be this little magnet or card going around with a picture of a woman in a style from the 1950's, and she's putting her hand to her forehead...with a dialog box (wait, what are those things called..?) saying "Oops, I forgot to have children!". Something like this.

I'm turning 50 tomorrow. I have a lot of sucking, swirling, eddies of emotion about that. And one of them is a twist on that cartoon.

The cartoon, I think, is making the point that she "had a life", and all of a sudden realized she hadn't done what she was "supposed" to do.

My twist is more of the "oh my god, I'm 50 already. But I never....." Those are the things that are haunting me. The things I thought I wanted to do, or be, but could never do.

Oh my god, I have turned 50, but I never....

....moved to California to live in the sunshine (my senior HS yearbook quote).

But I did find sunshine in Colorado when I moved here 19 years ago.

....finished my PhD and used it for doing something good in the world.

It was unrealistic to think that I was going to finish a PhD, I think. I saw where it was going and I didn't like it. But I had a good vision of running a place where people who needed help could come and stay for a while.

....became a singer, with a voice people wanted to hear.

My dream at age 7 was to grow up and sing on the Tonight Show. I prayed for it every single night. I did sing to both of my kids at night when they were very, very small.

....conquered the piano

I am a very good 'average keyboard player'. Good enough for a lot of things. I don't 'know the piano' the way a true pianist does. But I still love to play.

....found my 'calling'

I always wanted to know what it was I was here for. My 'special purpose', as Navin Johnson once said. I make my peace with it off and on. I'm just off right now. I envy people who have that feeling of a singular purpose in life.

....could consistently exercise regularly for longer than a few months at a time

I do it for a while. Then I reach a point where I just lose interest and don't want to anymore.

to be continued.

Panic At the Disco

2009-09-27T23:44:00.014-06:00

Ok, I did a shitty job tracking my Bikram experience. Oh well, yoga journals are boring anyway, aren't they?

Let me explain. No, there is too much. Let me sum up. The Bikram yoga heat + the effort I had to put out to hold the poses caused my MS to flare-up, two times in a row, the 2nd time even sooner than the first time.. So I tried a generic "hot yoga" class, at Corepower yoga. They set the heat about 4 or 5 degrees lower, and have a 60 minute class (vs the 90 minute Bikram class). That worked very well for me. Maybe, because I'm stubborn, I'll work up to being able to go back into Bikram via Corepower. But I'm not willing to trigger my MS even a little bit for Bikram. I can't get back to yoga until October, for budget reasons. Meanwhile, I have been regularly "working out" at Curves. (Talk about panic at the disco....a little Curves humor, there. Let's just say the music keeps a steady 140 beats per minute whether the original artist wanted it to or not. The shock of hearing the disco version of Marvin Gaye, Journey, or Stevies' Wonder or Nicks is what causes the panic.)

This weekend some things became clear that have been murky for a few months (thank you, Mercury).

We're been struggling with the soccer team my son has been on. Our local town didn't have enough space for Adrian and a couple of his other soccer buddies this season - there weren't enough kids for a second team. So we ended up going to the next town over. We joined the season 'already in progress'. From the beginning, it was hard, and it didn't feel right. Every time something happened, I just kept sucking it up and trying to keep my mouth shut. I figured if Adrian could do it, I could do it. He got off to a rocky start with the coach, but he decided to keep at it and try and make it work. I love him for that.

There's been maybe 5 games since then. Yesterday we had a game, and Adrian had kind of a falling out with J, the coach, at the game. J seemed pretty uptight and changed his mind once or twice about what position Adrian was going to play. I guess Adrian was asking him too many questions about it and it rubbed Jon the wrong way. He 'benched' Adrian for the game. I only know what Adrian told me - Jon may have a very rational reason for doing it. Rational in a way that was not visible to the human eye... Adrian was pretty upset with the way he was treated. He's sensitive that way.

Their styles really clash, so Adrian is going to find something else rather than stay on this team. An expensive clash :-) He feels like he did his best. We're certainly not going to push him to stay on the team. I think we'll be better off finding something in Boulder or Lafayette this winter and spring, if we can.

Ozzie had a vibe about J from the beginning that he had a temper and was really working on his management of it. It seems like Saturday he was struggling. It is something that Adrian is very sensitive to, and he won't tolerate feeling abused in any way. And I respect that in Adrian. I regret that he won't be playing for the rest of the season. One thing I can say about Adrian is that he knows what does and does not work for him. When I look at his beloved soccer backpack on the stairs, with his number 25 on it, I feel pretty sad. There was a huge ramp-up getting on board with this team. I feel pretty let down - not by Adrian, just by the experience. I talked to him tonight. He said he feels good. He said he will miss playing soccer, but won't miss the team or the coach. He wants to make sure he finds a place to play this winter or spring. Last week, I signed him up for a computer graphics art class after school, twice a week. Now, I am *really* glad I did that. He'll have something else going on to give him things to look forward to, and something to excel at. Losing soccer leaves a big hole.

Meanwhile, I've been ruminating for months over whether I would pick up and play again with my band, the Mighty Planktones. I made lists of pros and cons. This morning while rehearsing with our church band, which was many of the same people, I attained some much wanted clarity. I had kept thinking I wasn't going to play and it just didn't feel quite right. Then I realized I just need to focus on what is actually fun about it, for me, and make sure I'm doing those things, and doing less of the other.

The "other" includes a lot of stuff around gigs - to be honest, this is my least favorite part. The problem is not the performing. I've been performing on stages since I was a teenager and I'm fine with that part. For me, the stuff I don't like is the set list struggle, the power struggles, 'whose' song we are or aren't doing, how we can't seem to plan out intros, our kind of odd stage setup, and basically anything that starts creating drama. Being 'the band that always plays at all the church parties' is getting weird for me. There isn't much to be done about the various struggles, except for me to opt out of them as much as I can. There is a lot I can, and do, enjoy about practicing every week. I think I can get a lot of the fun out of that, and not sweat the gig hassles so much. it's not like we are gigging that regularly. We took the summer off and I'm thinking we won't have a public gig until the winter or spring. Just. Like. Soccer. Weird.

Another thing is the big fucking 5-0. I've let it mess with my head. I'm calming down again. I had a few weeks of food bingeing because I was dieting too strictly. Never fails. I dropped 10 pounds in two weeks. The pendulum is swinging a bit less wildly and I hope to be back on a more moderate track within the week. My mind is just not accepting the whole thing, though. I'm very very comfortable being in my 40's. I just can't grok what it means to be 50. I am sure that I don't want it to mean automatic weight gain every year for the rest of my life. I see that a lot. But my approach was getting too panicky. If I've learned anything from yoga, it would be that the only way to go through this is to breathe deeply, and then breathe deeply again.

It's only a few days away. For the life of me, I wasn't really coming up with anything that I wanted to "do" for the birthday. I settled on yoga, and eating right. Not bad, but not quite special. But a couple of weeks ago, my daughter told me that she really thought that she and I should drive out to Las Vegas to see The Black Eyed Peas and the U2 360 tour. They aren't coming to Denver. The Peas are her current favorite group. Towards the end of last week, I had the epiphany that that was exactly what I wanted to do. 'When the Who's away, the mice will play'....I am not a fan of Vegas, but I like spending time with my daughter and this will be a blast. The show is October 23rd. I bought the tickets off ebay - pretty interesting seats, actually, row 7 in the "Field Bleachers", and booked a pretty inexpensive hotel maybe a mile off the strip. Made a few inquiries on some condo's but they will probably be out of my price range. My next task is to buy the dreaded Criss Angel tickets. She loves him, I hate him. I'd much rather go to see The Beatles Love. I don't see how we can do both, so I'm going to go with Criss. I feel like this will be a great trip that we both will always remember, I hope fondly. I might not remember Criss that fondly...:-)

I am also suspecting that our societal belief that youth is what life is all about might be completely false. I have a little germ of an idea that maybe there will be something interesting about going through my 50's. One of my beliefs is that I will have to let go of wanting to be an attractive woman. I'm not sure if that is true. Christie Brinkley, Chrissie Hynde - they are still really attractive to me, and both in their 50's. How old is Valerie Bertinelli?? I saw her on Oprah the other day and she is still so adorable!! I am still heartbroken that she and Edward VH couldn't stay together. Cutest couple EVER, according to me.

Not helping anything has been the last few months of messing around with my drugs. Prozac, Wellbutrin, Buspar.....whatever it takes. Trying to find the right dosage and combination is a rough road. If I go too far one way, I have rage attacks, bulimia kicks in, and eventually depression. Yet, too much prozac (or possibly, any Prozac) and I have ZERO sex drive. That's been going on for 10 years. I've tried to switch off of it in the past with not much success. For some reason, I had the nerve to try it again now. I'm hoping to find a happy medium, somehow, but I'm losing my hope a little. I just don't know how I can be off of Prozac and also live in this world, raising my kids. And I don't know how to be on it and feel sexual.

Sometimes when I'm wrestling with decisions that aren't going to happen overnight, I look for a little escape. So I adopt a TV show. I tend to get them on DVD's, via Netflix, and watch the seasons that way. Some of the things I've watched that way in the past few years, and loved - "John From Cinncinnati", "Curb Your Enthusiasm", "Flight of The Conchords", "Boston Legal", "Slings and Arrows". I happened to hear Terry Gross interviewing the actor Gabriel Byrne on a podcast of "Fresh Air" recently. He fascinated me, and so did the idea of this show he is doing called "In Treatment". Watching people do therapy with Gabriel Byrne? I am so there. I watched season 1, disc 1 this weekend and I was, as Pete Townshend would say, right in tune. Loved it. Can't wait for disc 2.

I'm also watching Mad Men more or less in real time, as I have for the past two seasons. Real time in the sense that I watch the TiVo'd version of it about an hour after it airs. I enjoy that show now even more than the first two seasons. I even thought I might break down and get HBO!! After Ozzie did some investigation, it turned out it would be a HUGE production - and expense. Right now we have what I like to call 'sub-basic' analog cable. Seriously - it costs something like $16 a month. To get HBO, you have to get Digital Cable. Then, you have to upgrade your TiVos. Blah, blah - too much hassle. I've lived with waiting for the DVD's this long, I can keep doing it. I'd rather give the money to the guy who bought the U2 fan club tickets from a broker and sold them to me for what seemed like broker cost via ebay.... than give it to Comcast (I was going to say..."I'd rather give my money to U2" but in fact, I think I am three degrees removed from actually giving U2 money!).

In about a week, I'm having my cognitive processing evaluated, again. It is one of the ways they have decided to monitor the longer-term Tysabri patients. "They" being my neurologist/MS clinic. They just officially did the research to show that the longer you are on it, the more likely you'll get PML. There was an excellent article in the Wall Street Journal about it. Until the article, I hadn't seen any adjusted the odds, re the PML. Of course, the drug company's won't adjust them, because calculating the odds across the years work in the company's favor. And it's all about the stock price.

When I first made my decision to try Tysabri, I was told the odds of PML were 1 in 1000. Over time, as more people went on Tysabri, the odds got better. What the article said was that if you take into account being on the drug over 2 or 3 years, the odds come back to 1 in a 1000-1200. So, from my point of view, nothing much has changed.

There is a new drug that has been getting great results, but I don't think it will be out on the market for a few years. It's called Tovaxin. Whenever that becomes available, I think I will switch. The problem with going off of Tysabri is that it causes your MS to have a serious flare-up that seems to stick with people. So they don't recommend going off of it. You're damned if you do, damned if you don't! I am figuring the best thing to do is go off of it with another drug ready to go. And, stay on the damn diet.

Woman With MS Does Bikram Yoga, Day 3

2009-09-08T21:03:00.007-06:00

I'm going to keep a little journal of my first 10 days of Bikram yoga. I'm not doing them consecutively, necessarily. But I want to track how it goes.

This was the hardest day so far. I did much more work, in terms of doing more asanas (postures). But, I think I pushed it too far. About 20 minutes from the end of the class, I started feeling MS symptoms starting up from my elbows down to my hands, and from my knees to my feet. It's an unmistakeable tingling, numbing feeling that lets me know there is something going on. I get the same symptom when I eat food I'm sensitive to, too much Splenda, overeat sugar, etc. (I've actually quit the Splenda. I was getting this insane itching on the underside of my forearms a few times a week. I finally started paying attention to what I was doing right before it started. It turned out to be the Splenda in my tea! I had thought maybe I could get away with it, since the other artificial poisons are right out. So I'm back to stevia, honey, agave and the occasional sugar packets.)

At first I panicked. I used my mind to help manage the panic, and I stayed in the room and finished the class. I went back out in the hallway as soon as I could. I poured out my fears to Esak, the instructor. He was very kind, and told me he'd find someone else with MS doing Bikram that I could connect with. He's hooked into the WBN - the Worldwide Bikram Network. I just relaxed at the place for about an hour, and took a cool shower. After the hour, the MS symptoms had subsided. That is the normal thing with MS & heat. Once you cool back down, the symptoms start receding. But if I stay overheated for too long, I find that it takes me 24 hours to get past it. So catching it early is good.

What I did was overheat myself. I'm really going to have to watch that. I can tolerate the heat in the room. It's my body getting overheated from the effort that is the problems. I'd prefer not to have the MS kicking in, even though I know I will recover. I will need to take it a little slower than I want to. I tend to be, inwardly, rather competitive. I so want to be at the front of the class, if you know what I mean.

I also work out at Curves. Like the Bikram yoga, another experiment. With Curves, I can go in there for 35 minutes and I come out feeling fantastic, with more energy. There are fans all over the place. With the yoga, I have a bit of an energy drop, but then get a burst later on. The Curves workout doesn't begin to touch the yoga, in terms of aerobics and heart rate. I'm using it for strength and toning. We'll see how it works out. I am doing two months with them.

So my lesson learned from today - just because I want to be a super-yoga babe for Esak (to be clear, he doesn't know anything about that. It's completely in my own head...), doesn't mean I can push myself like all the other little yogaheads. Patience, trrishie. And it may be that after 10 classes, I find that it isn't gonna work for me. (But I want it to!!!).

Something I notice whenever I have any kind of flare-up, however minor, is a huge sense of disappointment. Because, for however long I've gone without one, I've started thinking "maybe it won't come back!", in spite of myself. It always does.

Unholy Trinity

2009-09-06T18:44:00.016-06:00

This past week I started doing Bikram yoga. Some people call it 'hot yoga'. It took me nearly a year to decide I would actually try it. You do an extremely challenging yoga routine in a room that has been heated to about 105 degrees. For 90 minutes. I KNOW. I have MS, which some people might know, does not play well with fire. Heat tends to bring on flare-ups and weakness. The more I read about Bikram yoga, though, the more I wanted to try it. I finally decided I'd give it one class, and if it completely slayed me (ie, caused a flare-up), I'd just leave it alone.

I did the class. The class was brutal. Honestly, I'm not sure I've done anything that physically hard before. I think I did about 40 - 50% of the postures. The instructor had told me that my goal should only be to "stay in the room". I did that, and a little more. But man, I did not want to stay in that room. And I was bargaining with myself and God through the whole thing, trying to just keep going. I would rest whenever I got dizzy, or nauseated or just felt too overcome. When I felt I could start again, I would. But when it was over, I felt really, really good. I ran into a couple people I know from other parts of my life. I didn't feel like as much of a fish out of water as I thought I might. About an hour later, I felt a little weak, and ate some lentils while at my friend Paul's house. I really started crashing when I got back home. But then I rebounded and I had more energy that night than I'd had in a while. I can't explain the heat thing. Why doesn't it make me drop to the floor like Woody in "Toy Story"?

I went back the next day. And I did a little better - maybe 50 - 55% of the postures, and I didn't want to leave the room at all. And that day, I felt pretty good for the entire rest of the day. I thought maybe I would do 10 days in a row (they give you an incredible beginner bargain rate for your first two weeks.) Something in me tells me that it is very, very good for me. And especially for, not in spite of, MS. I realized yesterday I wasn't going to be able to do 10 days in a row, not in this lifetime, anyway. Or maybe this part of my lifetime. I have a full life. But I am going to shoot for 3x a week. Until my intuition tells me otherwise. I might have to rename my blog "This Bikram Yoga is Making Me Thirsty".

I think I am consciously fighting the fear surrounding MS. I don't want to let it stop me anymore. In Bikram, they want you to push yourself slightly beyond what is comfortable for you. I only did that to a point. I will keep that appoach. The best thing about yoga for me is that I only have to compete with myself. Some people who do Bikram actually do compete. My instructor was Esak Garcia, who is inspiring, and adorable. He won the instructor championship in 2005. I remember thinking that yoga and competition don't seem to go together, but I got over it in that first class. It's not for me to judge. I just look forward to improving. The times in my life with MS that I have felt my best was when I was exercising and eating very healthily. I'm wanting to embrace that again. I couldn't go to a class today because it was my son's birthday.

So, Paula Poundstone does a bit about her 10-year-old son, 'Thomas E'. She says - her kids are challenging. "I mean, they're lovely, don't get me wrong." But, it's not the same all the time. There's some ups, there's some downs. "I wouldn't even trade the downs for anything else. But we got some pretty strong downs." Her son has a problem with tantrums. And it's a big problem. Just nutty, wild tantrums. Very violent, very insane. A couple a day, since he could stand. Except for last winter - he had the flu. He had a 104.6 degree temperature. "Nicest guy you'd ever want to meet." Everything was "thank you, mom", "please, mom", "I love you, mom".....it was so hard to call the doctor. She calls the dr - "Is there anyway we could keep him at just like 102?"

"It was so hard to call the doctor." God bless her for making me laugh. I am familiar with that type of child. My son turned 11 today. I recognized that he was dyslexic when he was about 3. I couldn't do anything about it really until he was older. I believe his emotional issues are hand-in-hand with his learning disabilities. I've read some supporting documentation on that. Thomas E. sounds a bit more intense than Adrian, but mainly in terms of frequency. As Adrian has gotten older, he's been able to deal with his emotional issues better. But it's still a huge challenge for me a few times a week. Every year there is somewhat of an issue with his birthday - it's always right around Labor Day, so his friends are somehow always gone for the weekend. The party never quite works out. In the past, we've squeaked by with somewhat spontaneous plan B's. This year, he had his mind set on a particular party, with particular people, and a present that we couldn't afford. And my husband and I screwed up by not dealing with everything early enough. Somehow, the summer starts ending, school starts and then "all of a sudden" it's Adrian's birthday. We need to get better at this.

Things didn't go well, and he is upstairs in his room having his 11 year old version of a tantrum. I know, he sounds like a spoiled brat. He isn't. His emotions just overwhelm him and he cannot get it together when a situation is coming down. Ozzie, my babysitter Nina and I attended a workshop years ago on "Explosive Kids", which was the title of a book I'd read. The guy who wrote the book, Ross Green, did the workshop. It was great. It helped us understand the importance of presenting reasonable choices and not boxing Adrian into a corner where he was trapped into a choice he couldn't handle. We all got better at managing Adrian, and he got better at it, too.

Right now, I am finding fault with myself and Adrian, but also with the whole situation around birthdays and holidays. We probably made a mistake by buying into the deal. We celebrate Christmas. There's a mythology that can develop around both birthdays and Christmas "all your dreams will be fulfilled on this day!!!" When your kid is young, it's easy to do it. Their dreams tend to consist of things that you can get at Target. As they get older, there is an adjustment that needs to happen. At some point, the 'dreams' collide with the family budget or the parents' will.

I clearly remember one Christmas when I was younger when I understood that Christmas was not about making my dreams come true. It was right after my parents split up. My dad came over on Christmas, and presents were awkwardly exchanged. One of my gifts was a dictionary. Now, if someone gave me a dictionary today, I'd be pretty thrilled - I love dictionaries. At that time - I think I was 12, I felt a sense of disappointment. My heart wanted those things I'd dreamily circled in the Sears catalog (yes, I am that old), but that wasn't what I got. "I told her I loved her, she gave me a pen." I look back and think a dictionary was a wonderful thing to get a 12 year old. Perhaps getting a dictionary then has something to do with why I now love dictionaries now. But at that age, at that moment, I couldn't quite appreciate it.

I adjusted my thinking and came to understand that gifts were given by humans, and that expectation management was something I needed to learn. And I did. I think this year is Adrian's year to learn about that. I wish I could have done a better job in realizing sooner what he was thinking. He had a certain thing in his mind (see picture above). We just aren't equipped to spend $800 on a motorbike, or to get him and us involved in that particular lifestyle quite yet.

I know this will pass. His tantrum will end. I will know when it is time to go up and try and comfort him. But there is something deeper gnawing at me.

I have struggled with rage issues for quite a long time. The earliest I remember it was about the age of 19, shortly after my major issues with recurrent depression began. It took me completely by surprise. It had never happened to me while growing up, that I can remember. I was shocked by the depth of it. It flared up again when I moved to Colorado with my then-friend Scott. Literally on the drive out to Colorado, from New Jersey. I was, off-and-on, out of control and started getting help from a shrink who prescribed meds. I was off of them for quite a while because of pregnancies. After a series of miscarriages, I finally had my daughter Dagny. And along with her birth, the rage came raging back, if you will. I learned (personally from Harville Hendrix, while on Oprah, no less. I like going right to the source. And to have it be televised.) about how to have productive and validating conversations in relationships, both with my kids and my husband.

Long story short, I have been off and mostly on SSRI's (mainly Prozac) since my son was born. My concern is that Adrian has inherited whatever the hell it is that fucks me up as well. I really don't understand my own issues - how much is biochemical? How much is childhood crap? Don't know for sure. I guess I'm able to help him work with his. Maybe if he gets a head start, he won't need to use the drugs. I'd certainly rather not. After a few years of various neurological medical people that I work with imploring me to try Wellbutrin instead of Prozac, I started making the switch. A few weeks into it, I was shocked to find out I had a sex drive. But with the return of my sex drive came the return of my rage. As I figured, I am going to need to go back to an expert to help me manage the transition, if it happens at all. I really want to figure this out. I'm feeling panicked about turning 50 and having some unturned stones.

I ended up going upstairs at a certain point last night and spent about an hour and a half with him. Through the grace of God, Harville, and Bikram yoga, we made it through an extremely painful process. I prayed, I harvilled, and I silently renewed my strength. He threw things, he banged his fists, and he cried as loud as I've ever heard him. At one point when I was holding him while he was screaming, my mind was telling me "I cannot do this anymore, I don't have the strength". But I remembered the yoga class. And my other little voice said "Yes, yes, you can do this." In the end, Ozzie and I (formerly my then-friend Scott) were able to redeem ourselves and put Adrian's birthday back together again. All the king's horses....

I give Adrian huge props for working through it. After it was all over, before he went to bed, he told me "Mom, thank you for helping me work through everything." Wow. What was interesting was that he wasn't upset about the thing I thought he was. I finally understood what it was that he'd wanted, and we were able to work out a solution. As we went through it, I thought of all the ways it could be going horribly wrong. How I could be yelling and screaming back, and threatening and punishing. I silently thanked the universe for conspiring to help me.

Prozac, Harville and Bikram - my personal unholy trinity.

The Addicting Potion of Death

2009-08-26T10:16:00.008-06:00

Here's a story by my 10 year son, that displays his vast knowledge of fast food places, alcohol, junk food and naturopathy.

"The Addicting Potion of Death" by Adrian

One day there was this healthy old man that only ate vegetables and drinks milk. He is 92 years old, but still looking healthy. He had no wrinkles or gray hair. His 3,000 year old son told him to try a burger. But he told his son,

"No way young son."

"Why?" his son complained.

Father: "You know what son? Try a carrot."

Son: "Fine, but only if you try every single fast food place.

Father: "Ok! Ok! Ok! OK! ok !!!!!!!!!!!!!

Son: "Now give me the carrot."

Father: "Here you go."

Son: "Thank you! This is pretty tasty. Ok, BLEHH!!!!!! I was joking but now you know what you have to do. I made a potion with all the fast food places in it, too."

Father: "This can't be good."

Son: "Drink up!"

Father: "What the...is this? What is in it?"

Son: "Yep, read it."

Father: "Hold it let me drink it first. Holy Snapple, this is some good food. What is it?"

Son: "Oh, now you want to know?"

Father: "Yeah, I do so tell me!"

Son: "Hmm. Ehhh. About that..."

Father: "I said tell me."

Son: "Ok. Ok. I'll tell you. Here it goes. McDonald's, Burger King, Dairy Queen, Starbucks, Denny's, Jack in the Box, Wendy's, Duncan Donuts, iHop, Red Robin, Dollar Tree, your house, Disneyland, Disneyworld, Elitch's and one more thing - RUM!"

Father: "What?"

Son: "It's true."

Father: "Really?"

Son: "No."

Father: "Oh."

"Why would I be lying?", the son says.

"True."

Son: "ok, but you've got to admit, it's good."

Father: "Yeah, I do, but still wrong!"

Son: "Does it look like I care?"

Father: "No."

Son: "Hey, I do care."

Father: "Oh, sorry"

Son: "It's ok. So, do you like it?"

Father: "Yeah, I kinda do like it. I mean, I like it a lot."

So the old man ate fast food for a long time until he was washing his hair and he found one little teeny itty bitty grey hair. He did not see it before because of all the grease from the French fries. Then after 9 months, all of his hair turned grey. And he was getting wrinkles. On the other hand, his son was starting to get lice and ticks and all over that he started to get hunched. So all because of that, he starting eating vegetables. The old man had to stop eating this rubbish. So he sold his house, ripped all of his money to shreds.
Now he's planning on becoming a hobo for one whole year. For that's how his son got off junk food.

One year goes by.

The old man has no memory whatsoever of what has happened. This just as he planned. he wanted to start a brand new life, junk food free.

The End.

PS. It's ok to eat junk food once in a while , or, all the time if you want grey hair, wrinkles, lice, ticks and a hunch. THE END.

Second Life

2009-08-26T06:40:00.003-06:00

It's been about 9 months since I found out that my request for p/t disability at work had been approved. Since then, I have been working part-time, including an entire month away last May.

It has taken me a while to settle in to the rhythm of work/not work/doing things that I actually want to do. I think maybe I have. One of the immediate benefits I noticed was being able to spend the time I need to on my body maintenance. As my friend Paul would say, I have a lemon. So much so that I considered whether the "Cash for Clunkers" might let me trade-in for a new one. I could go with simply parts replacement, but there's no money in that.

For several months now, it's been one body thing after another. A stupid dental choice (note: if a dentist wants to do work on a tooth that is NOT hurting, don't let him. If it ain't completely broke, don't mess with it.) That choice lead to weeks of tooth pain and antibiotics. Antibiotics at one time were my best friend but now, I have taken so many of them for my MS-related urinary tract infections, I really can barely tolerate them. My body really doesn't like it, and there is a recovery period to get my GI tract and other things back in order...let's see, would I rather have a UTI or a yeast infection? Oh, no need to decide, I'll always get both.

After that I developed a really nasty cold that quickly descended into my chest and is still hanging on for dear life. I think it has been a month. Then last weekend I developed a bladder infection, so more Aunty Bee's. My chest makes me cough, and coughing makes me pee and then I have to go change my pants and start all over again....

I mention all this not as a complaint festival, but to talk about yesterday. Despite the still-clearing up UTI, energetically I felt GREAT. Could not be better. Now, it used to be that every single time I had a UTI (which was quite frequent), I'd have a flare-up, and then I was toast (mmm....toast. I've been gluten-free for a year now). This is my first UTI in about 18 months, thanks to a great supplement I use every morning. So I am astounded not to be having a flare-up. I attribute this to the MS Diet that I've been following. Is that true? I have no idea. Well, I have some idea. But this has never happened before. If it is true, then that MS Diet is my new best friend.

Given the last few months, having a day where I felt that good was like stumbling onto an oasis.

I worked in the morning. Work was hilarious. Then I got myself out and about. I first went to the local "Curves", which is a women-only workout center that has one circuit that everybody does. I used to think it was just too lame for me. But then I stopped exercising. But then they revamped their machines. I think I'm deciding that any exercise with weights or resistance is better than doing nothing, which is what I'm doing now. I've hit that age where I can't get away with my laziness as much.

So I had a great time at Curves. I will go back three times and then decide whether to keep going, month by month or sign up for a year or whatever. I know how this shit goes, and I have to be careful not to dive in too deeply, too quickly.

After Curves, I went over to the Community Food Share to volunteer for a few hours. The CFS is an amazing place. They distribute food to about 60 agencies around two counties, and also distribute to individuals. They give bags of food to all the kids at Columbine Elementary in Longmont, as 80% of them qualify for the free breakfast and lunch program. They basically make my heart swell with joy.

On Monday, I had gone to the orientation. At the orientation were about 4 7th grade boys. They have to do some community service to make the honor roll at their school. They also need straight A's. When I showed up Tuesday, they were there. On my gosh, they were fun. And funny. We were packing bags of pears, ears of corn, apples and cucumbers. Lots of cucumber giggling going on. At one point, I told "Noah", "hey, you're pretty good at packing those cucumbers". Paused for a second......and then said "but I wouldn't go around telling people that :-)". I had a blast. I hope I see them every Tuesday.

When I was about 23 or 24, I was an overnight volunteer for the homeless shelter in my hometown of Morristown, NJ. I was pretty good at it. I loved interacting with everybody. I learned a lot about what happened in people's lives that caused them to end up there. I ended up writing a paper on it for a sociology class at Montclair State University (then college.) My visit to CFS yesterday reminded me of how important working at the shelter was, for me. Something I've always known about myself is that, like it or not, I need "meaning". And I don't get much of it from my job anymore. I'm thrilled to be getting it other places. Yesterday, I used a machine that I don't know the name of the pickup another thing that I can't remember the name of (45 boxes, 4 bags of food per box, stacked on a _______.) I used the machine to move the _____ into Cooler #2. Except Cooler #2 was packed, so I had to go to Cooler #1. They guy had told me I could live out my greatest grocery store fantasy of banging the entire load of stuff through the swinging doors into the cooler. It turned out to be FAR more complicated than I had planned on, but it was a blast. Now I know how to work, uh, that machine. It's like a new job skill!

Gotta go get kids to school. At work all day for me, so no fun with 7th graders for me...

Dagny's Super Power

2009-08-09T18:43:00.008-06:00

Ozzie and I were talking about getting rid of some of the clutter in our house. One of the things we have a hard time letting go of is our kid's artwork and writings. After about an hour of going through crap in the garage, he came back in with a green piece of paper in his hand. "Look at this, it explains it all. If only we had known this earlier". The paper was an exercise from some early elementary school grade. The teacher posed this question:

If you could have one superpower what would it be? (Nothing violent please). Describe the power and why you chose it. What would you do with it?

Little Dagny said:

"I would have what I want whenever I want nomader what! So if I want a hot dog I get it.

**ZAP** (drawing of hot dog) **ZAP**

I would vizuwliz it and it would just pop up in my hands!"

So now we know. She just wants whatever she wants whenever she wants nomader what.

I Ron Man

2009-08-06T23:30:00.006-06:00

My son says "Ironman" like this: "I Ron Man". He's getting ready to turn 11, and his verbal eccentricities continue to amuse me. His speech impairment is still causing him problems. Or really, me and others around him are having the problems. The kid was in speech therapy from 2.5 years old through 3rd grade. In 4th grade, they said he didn't qualify anymore. Very funny. How would those guys like to go through life sounding like they just had woot canaw??

I suggested to him that perhaps we do some more speech therapy and he is adamantly opposed. I think how he is doing with his peers this year will be the determining factor. We are all having major back to school anxiety. Ugh. We're so much happier without it. Can't you learn everything you need to know from TV?

Tonight he got out of the shower and I said "feeling better?" He said "Yeah, I'm not as stiffly." Then, "I feel brand new".

He has had his little Adrianisms since he was 4 months old. At 4 months, he would look at me, smile and make a noise that we came to call the "pirate voice". It was kind of a gutteral "grrrrrrr". At the time, I swore he was just trying to make me laugh. Now that I know him better, I *know* he was trying to make me laugh. He usually succeeded.

He used to say "morningtime" and "darktime", to refer to morning or night. He will occasionally still say those. Another one that has stuck is "from accident". "Mom, remember when you did that one thing from accident?" "That one thing" is another one.

Anyhow, I can tell from the fact that it is way into darktime that I need to sleep. It would be cool to wake up feeling less stiffly and brand new!

The rain, the park and other things from today

2009-08-05T21:08:00.024-06:00

My son Adrian makes videos and posts them to YouTube. He is very proud of his subscribers. I love his videos, and even more, I love the way he says "subscribe" and "subscribers". The accent is on the first syllable. "Dad! Bapod is one of your SUBscribers!"

Today, Adrian and I were playing the Incredible Hulk Playstation 2 game. Well, he was playing and I was his audience. The game, like the Spiderman games, is set in Manhattan, and goes into a very refined level of detail in terms of buildings in the city, streets, etc. He was trying to figure out what the name of the building was that he was climbing, and he mentioned the World Trade Centers. He saw a look flash across my face. And before I could say anything, he said with certainy, "Mom, they still have all the buildings in here, even if somebody has knocked them down."

After that we played Rock Band, which I actually do play. Normally I sing and he plays the drums. There was one song in particular that he wanted to sing, so we switched. "Alive", by Pearl Jam. Any crazy idea I had that maybe I had some musical ability is demolished anytime I try playing the drums in Rock Band. Even on easy. He sang 1000x better than I played. But we did not have a full-on Rock Band FAIL. A Rock Band FAIL is a terrible thing for one's morale.

So, I went to see the New Neurologist today. New to me and Anschutz. First of all, today was his first day on the job! I explained to him how the imaging system worked when he was trying to compare new MRI to previous MRI. That made me feel competent, and it was one less question he had to go ask "Becky".

I had an enormous amount of trepidation about the appointment. Breaking in a new doctor is always a challenge, and especially when you have 10 years of history with MS, medications and all that to explain.

It worked out so much better than I could have imagined. I sat there while he counted 52 lesions on my brain. My understanding is generally they stop counting after about 50. I think when I was first diagnosed I had 8. We went back and looked at the MRI from a year ago, and he counted 54. Now, that made me feel good. Between Tysabri and the diet, I am not getting worse. I knew that, but it feels good to see it on the MRI. This is my second year with no new brain lesions.

I know that it is all much more complicated than the # of lesions, but an increase in lesions indicates an increase in progression, and that's bad. No increase in lesions, and no active lesions is good.

He met with me for about an hour, which was surprising. He suggested I switch out my antidepressant from Prozac to Wellbutrin, which dr.'s have been telling me for years. Reasons being that Wellburtin doesn't mess with sex drive the way Prozac does. Prozac is considered a much 'heavier' drug, in terms of energy in the body. Wellbutrin allegedly has a lighter touch. The past few years, I haven't wanted to mess with it. I have enough other stuff going on. But this time I agreed. I asked him "if I start having rage attacks in two months, who should I call?" He said "You should call me". I said, "Are you sure that's the relationship you want to have with me??". I made him laugh several times, which is always my barometer of a good neurologist :-)

We had a long talk about Tysabri. In the end, we both agreed that the best course is to continue on it. I'm at the two year mark, and there is no data about what happens to patients beyond the two years. His experience at his "previous institution" (in Boston) was helpful. He was part of the team that studied Tysabri and what happens when you take a 3 month vacation from it. The results showed a rebound effect, and the patients were miserable and had exacerbations and progression. His conclusion was there is not a compelling reason to take Tysabri vacations. With everything they know now, if you are like me and have had no problems, with very good results, staying on it makes the most sense.

I agree. When I was on Copaxone, Rebif and Novantrone, MS kept on progressing. I am also much more 'compliant' on Tysabri - there is no down side for me. No self-injecting, no bruised abdomens, no added depression. The addition of following an MS Diet seemed like a deal clincher for me. I think it is the diet that helps me with my day to day existence.

He supported my diet choice although cautioned me against over-restricting. At the moment, I don't know how to do that.

He answered a few questions I had about Tysabri. He asked me to see him every three months. I almost laughed at that, as previously, it was impossibly to see a neurologist every three months in that clinic! I should probably book about 10 appointments right now to make sure that continues to be true.

One of the best things that happened was he arranged for me to have my Tysabri infusion on Friday. The infusion center wouldn't let me have this week due to me being on an antibiotic. He cleared it for me, as my infection is gone. Woo! I felt an ENORMOUS amount of relief. I had no idea how much that had been bothering me. I felt better walking out of the hospital than I have in two weeks. It was as if I made it through the appointment with no Neurology FAIL. I don't know that that has ever happened before. I usually leave the appointment with some bad news one way or another. I'm just going to take a moment and appreciate that.

Dr. Miravalle, here's to a minimum of full-on FAIL's.

My Teeth, My Tysabri, My MS, My Sanity

2009-08-04T20:44:00.003-06:00

"Whenever you feel lost, alone, depressed, or hopeless, consider this: That dark, powerful pain is your gift. Dig deep and feel it, then use it as your fuel. Make the world a better place by offering to others what you wish had been offered to you." -Sue Frederick

I am wrapping up two weeks of dental hell. Had a filling replaced and a crown installed, but the trauma to the tooth necessitated a root canal. I had part 1 of the root canal last Monday and part II on Thursday. The pain did not begin to cease until Sunday. I was taking antibiotics beginning Thursday night so I assume that there was an infection, and that is why the pain kept on going. Today, I went the entire day with no ibuprofen, so I think I am over the really bad stuff.

Of course, the tooth trauma messes with MS and the infection wasn't helping any. I realized last week I was more than a week behind on my Tysabri schedule somehow. I couldn't get scheduled until today. I drove all the way down there and found out I can't do Tysabri while on an antibiotic. That never happened before! Gotta wait 10 days, which translates into 2 more weeks. So I have basically will have skipped nearly two months of treatment. I am stupidly tired and crabby as a result of all of the above, plus no Ty.

Too bad, I think I need something. Two weeks isn't that long to wait. I don't like messing with any of it, however. My teeth, my Tysabri, my MS, my sanity.

Now that I'm done with the Vicodin, the ibuprofen, and almost done with the antibiotics, I can get back on track with my probiotics and supplements. I've been fighting a cold off since Sunday night as well. Perhaps like celebrity deaths, physical problems come in threes - root canals, infections and colds. Maybe tomorrow I can be past the lot of it!

I looked up when my last root canal was - about 8 months ago. I'm remembering now that it was no picnic either. But this one was certainly the worst one yet.

Tomorrow I drive back down to the hospital to see a new neurologist. My regular one is too busy. There's a six month wait to see him. We're supposed to review my recent MRI, and I have Tysabri questions for him. I'm at the two year mark, and am wondering about the smartest course for the future.

This past weekend, my family went on a church retreat in the mountains. My son really wanted to go, so we went. It worked out great for him. Not so sure about the rest of us. It was hard because I was in so much pain the whole time. I was in no mood for personal growth. I didn't like how controlling people were around certain things - the kids and the schedule, primarily. I also grew to understand that generally, my church believes a lot of stuff that I don't. I love God, but not religion. This particular religion might be the closest I've gotten to being able to tolerate one, but I ran into some roadblocks on the retreat. So I need time to think.

I also became more aware of my increasing propensity to attract flakes. By flakes, I mean people who don't do what they say they will, or do things that seem quite strange and unstable to me. The problem I have with it is that I get involved with them too closely and get hurt, because I forget that they are basically a flake.

On the positive side of things, I read a good blog post in the New York times by a guy, Dana Jennings, recovering from prostate cancer. He reminded me to be grateful, and to look forward to my sweetened green tea tomorrow morning. I felt compelled to post a comment and mentioned my cancer vs. MS story. I notice it's hard when everyone around you is feeling grateful and you are not. I somehow opened up my heart and grokked what was true, and was able to feel it.

School starts in two weeks. I cannot bear it. I have to get my energy back.

"Make the world a better place by offering to others what you wish had been offered to you".

I'm thinking about what that is.

OH my gosh they are using my picture on Facebook!!!!

2009-07-28T20:05:00.003-06:00

Some people are freaking out because they've seen their picture or their spouse's picture used in an ad in Facebook. Article here. Then the comments were all hostile about the horrible social network users who have no life. I felt compelled to comment.

First of all, you can block all those ads with a Firefox plugin.

Secondly, 'your' wife's picture is only displaying to you, not to everybody else. Do we really think everybody else will be that interested in that picture? No. It's just for you!

If you don't like social networks, please don't use them. No need to claim people who do use them need to "get a life". It's really pretty obnoxious to say that to people you don't really know. If you do use them, understand that nothing is private on the internet.

As far as I'm concerned, Facebook can use my picture wherever they want. I probably won't see it, and I didn't get enough attention as a child, anyway. :-)

"I Was a Baby Bulimic"

2009-07-25T21:37:00.010-06:00

Tonight I read this article by the New York Times food critic, Frank Bruni.

http://www.nytimes.com/2009/07/19/magazine/19bruni-t.html?hp

I wrote this comment back to him:

I read this article with near-astonishment at the recognition I felt. Thank you so much for writing it.

We must be almost exactly the same age, and I could have grown up right next to you. As a teenager, I was a 'mother's helper' in Madison, CT for 4 summers back in the day. My dad and I did the Atkin's diet back in the 70's. Also, the fasting and the liquid protein diet. I can still remember the bad taste of that protein. So many of my life memories are food related. I had the very same favorite ice cream treat from the truck. I still imagine eating it sometimes.

I was such a fat baby that the doctor TAPED MY CHEEKS DOWN so I could see. I battled with my compulsive eating, compulsive dieting, compulsive purging for years. I have maintained what appears to be a 'normal' weight for about 10 years now, but I still never stop obsessing. I now follow a strict gluten-free, dairy-free diet to help manage multiple sclerosis. I guess I'll never be free of the curse. I learned around the age of 35 to get brutally honest about my problem and write about it. That helped me with much of the shame. The shame is just poisonous.

My joke with the men in my life has been that what sex is to them, food is to me. A bubbling provolone topped cheeseburger can distract me completely from any conversation - it's like cleavage.

I look forward to your book's publication, and feel compassion for you and everyone who has lived with an eating disorder for so long.

Dagny's driving!

2009-07-04T15:44:00.000-06:00

I don't think you can see him but Tweedy is so cute

2009-07-03T21:22:00.002-06:00

The people standing in front of me at the Wilco show :-)

2009-07-03T21:16:00.001-06:00

MS bloggers & Twitter

2009-06-25T20:22:00.004-06:00

Is there anyone with MS who doesn't have a blog? I don't think so. And now, Twitter. Here's my #1 pet peeve with Twitter. People who set up "autoTweets". That is, they have a script that automatically send out the same tweet at some regular interval - whether it be 2 hours (yes, some people do that) or days. When I realize that's someone's deal on Twitter, I drop out of their list. It's just blog advertising, and also very annoying for those who use Twitter to have actual interactions. The PR angle of Twitter is becoming more prevalent and the more prevalent it is, the more annoying. To me, anyway.

The other thing I have been aggravated about today is the snippy, sanctimonious, smug comments from religoius types about whether Michael Jackson is "going to heaven". Sorry, judgmental "Christians", but fuck off. One wonders whether you are going to heaven, either. WWJD indeed.

Right Diligence

2009-06-15T19:23:00.006-06:00

The spiritual community that I hang with believes in something I'm not sure I do. They believe that negative thoughts that enter your mind are evil spirits. They refer to them as "the hells". I do find the construct useful to think about. It gives a bit of separation between "me" and the negativity. Yet, I don't think a lot of my negativity comes from outside of me. I think it is my mind, and my chemistry. When I think about the concept of 'the hells', I have always wondered, "why not love the hells?" I mean, why not respond with love? This I base on experience from raising myself, and raising my kids. When a kid is having a tantrum, what they really want is love. I have floated that idea as a trial balloon but it usually hasn't gone over well.

I used to do these visualizations occasionally. In my 20's, I was, seemingly, completely held hostage by my compulsive eating and dieting. I was turning to different things to try and help myself. One of them was a meditation-visualization that involved me talking to the part of me that compulsively ate. I asked her "what do I need to do to stop this?" She was dressed as a witch. She removed her hat, and gave it to me. "You need to love me and accept me". That was just too profound for my tiny little brain at the time. But it has stuck with me all these years. And even at the time, I started slowly to understand it.

Today I was reading an issue of "BuddhaDharma" magazine. This comment on "Right Diligence" caught my eye:

."When we say we should not give negative seeds a chance to develop, we are referring to the teaching of Right Diligence. This means first of all that when positive seeds are present we should keep them alive as long as possible. One example of a positive seed is compassion. We should keep the seed of compassion alive in our hearts and our minds. One way to keep this seed alive is to be aware of the suffering.

Second, the practice of Right Diligence means that we do not give negative seeds like hatred and anger a chance to increase by watering them every day. If you are experienced in the practice of mindfulness, you can complete the practice of Right Diligence by the practice of embracing strong emotions.

From time to time there is a mental formation that refuses to be replaced, like a CD that plays over and over. Even if you have a strong intention to replace it, it is too strong. If you are a skillful practitioner you will not try to change the CD. You will say, "You want to stay? It's ok!" You accept the CD, you accept the feeling, you embrace it tenderly, and look deeply into it. That is also the teaching of the Buddha, to recognize the painful emotion--not to fight it, but to recognize and embrace it to get relief. Look deeply into its nature to find all the roots of that feeling or emotion, because understanding is the way of liberation. Mindfulness and concentration lead to insight that is liberating."

Wow..see, that is what I was trying to say, and trying to learn. And in perfect synchronicity with the Jung quote mentioned in another post. "We cannot change anything unless we accept it. Condemnation does not liberate, it oppresses."

I will be meditating on this for a while. It in some way speaks to the political turf wars that I seem to constantly bump into.

How to extract from the politics and the hate

2009-06-12T13:35:00.009-06:00

I cannot believe how we all buy into the hype. Today, it's the Letterman-Palin hype. Please. It's no better than gossip. Get a grip. It's a photo op for both parties, fed by all of the media, and all of us.

I see a friend of mine post on Twitter "Palin 1, Lauer 0. Very effective. http://bit.ly/3RJ1ft" regarding Sarah Palin's appearance on the Today show. Please. She uses David Letterman's joke as an opportunity to promote herself and her agenda. All sides do it, I know that. Dave uses Palin to make a joke because she's an easy target. I happen to prefer Letterman to Palin and therefore I will be hard-pressed to be annoyed at the guy because he made a joke at the Palin's and A-Rods - primarily A-Rod's - expense. It's just one example of what is out there every single day.

What I don't like is all the hatred, and the judgements about everyone else. I think staying away from the media is a great way to avoid these things. I find that is easy to say, but not to do. Twitter and Facebook don't help any, and I am rethinking both of those.

The thing is, the internet and the media is not the only place. It is a human condition. Last week at my church, someone was commenting on how she views certain people as being "not as far along" as she is, spiritually. It struck me as horribly arrogant. It's not who I want to be, and not who I want to hang out with.

Someone on Facebook invited me to join a group of people against violence to animals. Their group title is "Stop Animal Cruelty, The people Who beat animals should be beaten back!." As Nick Feyn might say, "No!!!!" You've lost all credibility with me by saying anyone should be beaten. I get the passion, I really do. But that is exactly how I think we go wrong.

I suppose the best thing I can do is look within, and try to eradicate where I am doing it myself. I cannot control anyone else. I can possibly control how I react to them. It's hard not to react in kind - yeah, you people are assholes! That doesn't work out.

It hurts me so much, I can feel it in my heart right now. I feel like there are a few issues in the world that tug at my heart - one is hunger, another is child abuse, and another is how we divide ourselves into groups and then hate each other - racism, sexism, intolerance of gays, intolerance of religion, intolerance of atheism....it's all the same thing!!! When I hear myself or anyone else passionately hating another group that pisses them off for whatever reason, I can only think of how we are guilty of the same thing that they are hating.

I've always been on the left, politically. It wasn't something I decided as much as I just always felt was a human, loving way to be in the world. Now, I'm not sure if I affiliate with any particular political party. I certainly agree or disagree on ideas, but there are things I don't agree with in both parties. I think I want to live what I feel, and not worry about all the hype, the buzz and the conflict. I will keep finding ways to do that. Joining the "One" organization was one way. Giving money to certain organizations that actually help people is another. I need more ways. And this is a good time in my life to be able to be useful.

Here's a good quote my friend Paul uses:

"We cannot change anything unless we accept it. Condemnation does not
liberate, it oppresses."
-- Carl Jung

Two scenes from "Slings and Arrows", the last episode of season 2.

2009-06-12T11:21:00.002-06:00

Geoffrey and Ellen are the long-time, somewhat star-crossed lovers in the show. Geoffrey has just finished a successful but rocky opening week of Macbeth. He's the artistic director of the company. Ellen played Lady Macbeth. Geoffrey Tennant introduces Romeo and Juliet, from the stage. Ellen is watching from the audience.

Geoffrey: Uh, Good evening, it is, I am told, a tradition here that on the final night of opening week, a token of thanks be present to, uh, our season's major sponsor. So i would like to invite Mr. Barnaby Henderson to come and accept this framed photograph signed by the entire Romeo and Juliet company.

Mr Henderson: I just have a few words. I'm very pleased to accept this gift on behalf of Graymore Industries, a diversified technology company providing innovative and practical solutions for over 30 years.

On a personal note, I'd just like to say how especially moved that I am here tonight. Romeo and Juliet, one of the greatest love stories ever told, and one that has special meaning for my wife Carol and me. See, we've been married for 30 years, and in all that time, I don't think we've ever missed a production of this play, that we could get to. Carol can't be here tonight. She's in the hospital, recovering from heart surgery. Uh, she's going to be alright, the doctors tell me.

But you know, when I think of all the times when we nearly gave up on each other, I get kind of shakey. I wasn't much of a husband there for a while. I'll tell you that for free. But an experience like this - it teaches you something, about the power of love. It certainly does.

Enjoy!

(Mr. Henderson and Geoffrey walk off stage.)

(Romeo and Juliet starts...."Two households, both alike in dignity, in fair Verona..." )

(Ellen: Begins crying. Walks out. Joins Geoffrey on the side of the stage, listening to the play.)

Ellen: I hate this play.

Geoffrey: Yeah.

Ellen: You watch it and you feel miserable because you don't have that kind of passion in your life. Nobody does. It's a fantasy. It's irresponsible.

Geoffrey: Yeah.

Geoffrey: You know what I think? I think it's painfully accurate. Two idiots meet. They fall in love. They're happy. Briefly. Then all hell breaks loose. Happens all the time.

Ellen: That old man. Oh my god.

Geoffrey: Mr. Henderson?

Ellen: Yeah. That hurt.

Ellen: I would have got through this quite nicely without Mr. Henderson. I'm so fucking miserable, Geoffrey.

Geoffrey: Yeah, I know. Me too.

Ellen: (Emotional sigh) Am I a loser?

Geoffrey: Mm hmm. Yeah. You are. So am I. We're both big, fat losers.

Ellen: Your my only friend. Isn't that pathetic?

Geoffrey: Yeah. That is pathetic.

Ellen: I owe $27,867.53 in back taxes.

(Geoffrey grabs Ellen's hand)

Geoffrey: Let's watch the show.

Cut to the afterparty at the bar. Geoffrey and Ellen walk in - Ellen spots Sloane, her former and quite young boyfriend.

Sloane: Ellen!

Ellen: Hi!!

Sloane: I'm uh, crashing the party. Is that cool?

Geoffrey: Yah, sure.

Sloane: Uh, me and my girlfriend. Tuesday. That's her over there.

Ellen: She seems nice.

Sloane: So uh, how are you two?

Geoffrey: Good.

Ellen: Good!

Sloane: I thought for sure you'd be married by now.

Ellen: Well, we broke up pretty quickly, actually.

Sloane: What the fuck? You broke up. You broke with me so you could be together!

Ellen: Well, it's complicated, Sloane.

Sloane: No it isn't. You guys love each other, right.

Ellen: We did.

Sloane: It doesn't go away.....

Geoffrey: Oh yeah, it can.

Ellen: It's different when you're older.

Sloane: That's bullshit!

Geoffrey: Nah, Sloane, honestly, we're just--we're a couple of losers, that's all.

Ellen: We're miserable - both of us.

Geoffrey: Happily.

Ellen: Really.

Sloane: You guys are so obviously meant to be together. It's so obvious it pisses me off. Alright? What the fuck, just deal with it! You fucking broke my heart, Ellen., alright, but I knew you were right. I mean, come on.

Geoffrey: Wow, out of the mouths of babes.

Ellen: Oh, Geoffrey.

Geoffrey: I don't want to be here anymore.

Ellen: Take me home.

No more UTI's

2009-06-09T17:52:00.004-06:00

I have to tell anyone who struggles with MS and/or bladder infections, you might try a product called D-Mannose. Yes, I know it sounds like some old outer space alien movie that Mystery Theater 3000 would do, but it is actually a supplement that has saved my butt. My MS episodes were always triggered by infections, particularly raging bladder infections. As anyone with MS knows, recurring bladder infections can just be part of the deal. I used low-dose antibiotics for a while, then tried cranberry extract. I've used D-Mannose for nearly a year and I haven't had ONE major infection. I take two capsules or a half-teaspoon of the powder every morning. If I even suspect anything is starting to develop, infection-wise, I take 3 of them twice a day. Within 24 hours, any signs are just gone. I can't recommend it highly enough. I don't make any money from it or from iherb. It is made my different companies, and is also sold as "ClearTract". They are just my favorite site to order from.

The tornado I saw yesterday

2009-06-08T10:19:00.001-06:00

Reflections on My Former Job

2009-06-04T14:55:00.001-06:00

When you are the outgoing development manager of a huge software
system listening to the incoming managers talking about the new
system, it kind of feels like being the ex-wife. Whatever used to
happen in your marriage was bad. The new marriage will have a much
better process! This is going to be so great for the kids!

Trrish is KBCO

2009-06-04T01:04:00.002-06:00

I hear they are rerunning some "I am KBCO" promos.

Here's how I ended up doing one.

--- chaslil@... wrote:

> "I'm Trish and I'm KBCO". Way to go, Trrish. Did you go into
> studio for that?
> Meet your morning DJ bud Bret Saunders?

Here's how that happened.

During the week, I wake up between 5:30 and 6:00 am, which is the
start of my fav DJ bud Bret's shift. During the school year, I tend
to have my first thoughts be kind of anxiety-ridden "oh-god-i-have-
to-get-the-kids-up,-fed,-and-to-school-on-time-and-damn-it-I-need-to-
get-to-the-manager-meeting-at-8:45".

Basically, school mornings suck, in my opinion.

So one morning I wake up and while having these thoughts, my radio
alarm goes off around 5:45 and the first thing I hear is one of
the "I am KBCO" promos. It was the usual stuff that makes me roll
my eyes. Some woman talking about how "I'm 28 and I love to cook
gourmet food; I'm a great skier; I used to be a model; I have a PhD
in environmental sciences. I AM KBCO."

I think to myself, "yeah, right. My "I am KBCO" would be very
different, and I think mine is way more in touch with reality." So,
I get my laptop and send an email to Bret and his crew.

I send this paragraph:
____________________

Dear Bret, Robbyn and Chris,

I woke up at 5:30 to the "I am KBCO" woman who sounds really perfect
and makes gourmet food. :-)

I'm a mother of two. I work full-time at CU. I overcooked the
microwave pancakes for breakfast and got the kids to school 5
minutes late...again. I got to the manager meeting 10 minutes late,
tripped over my croc's and spill my soy chai on the way to my cube.
I love Wilco, Fountains of Wayne, and listened to The Who on my way
to drop my son off at soccer practice while simultaneously putting
on his cleats and shin guards in the car.

*I* am KBCO.

seriously,
Trish

ps. let me know if you want me to record it
___________________

A little while later, Bret reads it on air. The thing I love about
Bret is that he is funny. So I have occasionally sent him emails
with things I think are funny. So, I was happy he thought it was
entertaining enough to read.

Even though I was being sarcastic by offering to record it, they
asked me to come in and record it, which I did. The guy interviewed
me for quite a while. My daughter Dagny came with me and she was
very impressed at getting to go into the station (while Bret was on
the air, no less). We didn't meet Bret but did get to watch another
dj, Ginger, getting ready for her show.

The funny part was, a lot of the music I like, they don't play too
much, if at all. So I mentioned Robert Plant, because they had him
in the studio to do a "Studio C" session. But I made sure I
mentioned the groups I like that they don't play. Because I think
they should play them. But I'm sure they didn't include those bands
in the edited promo!

It was fun for me, too, because I am truly a radio geek.

They started airing it about two months ago. I've never heard it!!
I've heard from a ton of people who have. The funniest story was
from a woman who works for me who was in her office and said,

"Trish, all of sudden I heard your voice, and I kept looking around
my office trying to figure out where you were....I finally figured
out you were coming out of the radio!!!!"

So, that's the story.

trrish