Sunday, May 24, 2009

Time once again for the Blue Crab Festival or What was I thinking?

Last year found me venturing out to the Blue Crab Festival for the first time since my diagnosis in '99. Fingolimod had given me back so much of my life that I dared to walk where I hadn't walked in years: the streets of downtown Palatka, FL during one of their many street-clogging, traffic-halting "festivals".

This year was not going to find me sweating and gimping around cursing myself and wishing I had never left the comfort of my air conditioned home with comfy chairs ever 10 feet. No sir! I had learned that I COULD scale Mt. Blue Crab Festival and live to tell the tale... those who climb Everest don't do it as a once a year family vacation. They do it, they got the T-shirt, and they move on.

I was going to move on.... over from the computer to the couch and see what was on satellite.

Until I got the call from my sister.

"Did you want to take the kids to the Blue Crab Festival and check out the Seafood Cookoff?"

Knee jerk reaction would be to say "NOOOOOO!!!" Not only was I happy not to drive there, find a place to park within a day's hike to the activities, walk all over in the heat and humidity until I couldn't feel my legs and my knees wanted to buckle... I didn't want to also spend my life savings on letting the kids gamble with their lives aboard the rickety-looking carnival rides operated by folks with names like "Cletus" who were sporting a whole set of 3 teeth in their heads.

But there was something intriguing, magical, beckoning, about the words "Seafood Cookoff". Maybe it had to do with the fact that since I gave up cigarettes I have doubled down on my food fascination, or maybe it was the fact that I had yet to eat breakfast that day, but I caved.

Within hours we were instructing the kids on how much of a rip-off the rides were and how much more enjoyment they would get out of a funnel cake as we were on our way (blue parking plackard in hand) to go the the Blue Crab Festival Seafood Cookoff.

We parked at the Holiday Inn, which was across the 4-lane highway from the festival. As we pulled into the parking lot we saw 3 dirt-bag looking people with a hand made sign stuck in the ground that said "Parking $5". They were sitting on those plastic patio chairs you can get from Big Lots for $5 each and they just didn't have any "officalness" about them. We handed them $5 as my sister passed on the joke that we thought they were just sitting there taking $5 because it seemed like a good scam. I still don't know if Holiday Inn had a clue they were selling their parking spaces.

We had the bright idea that we should walk the boardwalk that goes parallel to the bridge, out over the water, and then crosses under the bridge and back parallel to the other side of the street. This way we would avoid all the traffic as there was no light to cross at right there by the foot of the bridge.

We won't do that again.

Northeast Florida has just had 8 straight days of torrential downpours and this day (Saturday, May 23, 2009) looked to hold no promise of any glimpse of sunshine, altho the rains had temporarily ceased.

The walkway was wooden and the cupped boards were puddled with water. This was fine until we entered the underworld side of Beneath The Bridge where bird crap, bat droppings, mold, and mildew rule the domain. Suddenly the puddles became slip-n-slide death trap land mines to be avoided at all cost.

At one point my sister grabbed the handrail to avoid catastrophy. Big mistake. She shook hands with a great big spiderweb instead. Ewwww!!

By the time we had walked first out over the water, then under the bridge of trolls, and back to dry land, we had walked about 10 times the crow flying distance between the car and the tent with the Seafood Cookoff. Ah well, live and learn. Or, live and forget and be condemned to think that street-crossing strategy is a good idea next year.

We made it to the tent where the Seafood Cookoff was underway but not before hunting down a funnel cake. Seems my son was more interested in cartoons than breakfast, so (once you take away electronic forms of stimulation) he was suddenly starving to death.

Hard to believe a fried lump of drizzled batter much akin to the mess I sometimes make creating pancakes can actually fetch $5. Same thing with the lemon, chopped in half and tossed into a cup (no larger than I'm given for urine samples) along with a little hose water and sugar. They dub it Lemonade and get $5.

We spent $15 on one funnel cake and 2 lemonades before we ever made it to the Seafood Cookoff tent.

Once seated at a plywood table we tore into the funnel cake from 4 competing sides and devoured the poor thing before you could say "drawn and quartered".

We saw a few people we knew, but mostly strangers who came up with their kids and said "my kid knows your kid from school and wanted to say 'hi'."

There's nothing more disconcerting than taking a 6-year-old granddaughter and a 10-year-old son someplace out in public only to discover they have more of a social life than you do.

Then came the judging. I don't remember who won what for which entry, but I do remember that Mary Conner who got 3rd place for her chowder gets my vote for best tasting seafood concoction I ever ate. Yum! I don't even CARE that I didn't get to sample 1st or 2nd place stuff. Her's was downright heavenly.

After we tossed our sample cups we debated the long avenue stretched out ahead of us. What appeared to be hundred of blocks (in reality only about 10 maybe) lined on either side with booths of arts and crafts, downright junk, and the wild and weird.

Dammit. I was tired of giving in to my old body and tired legs every year. It's gotten to where if you ask one of the kids in the family to do something, they complain "I don't want legs are tired!" Knowing where they got that saying made me want to fight thru the pain that much more.

"Let's see what's up that way," I said to my sister. She was taken aback (I always wanted to say that) and had a look of awe and wonderment on her face.

"You really want to??" she said in that "I'm not so sure about your current state of mind" kind of tone.

"Yeah, I think so."

And with that we each took the hand of one of the kids and started wandering with the ebb and flow of humanity in the general direction of Up the Street and (more critically) Away from the Car.

There were leather belts and caps with names stamped on them, there were cloggers dancing in the street, there was a guy with an automatic bubble blower, there were food vendors and hand-made everything....

I came to stop (more out of physical necessity than interest) at a booth where the vendors were selling their hand made pottery. The longer I looked, the more beautiful the pieces became. I started looking at the price tags (something I never bother to do at these places since I have no intention of spending money).

And then I spied the basket.

There was a woven basket with these small disk shapes of pottery, all ruffled on their edges and stamped with various designs in the center -- all beach themed. I read the sign -- "Spoon rests - $4 ea. or 3/$10".

That's all it took. I've been meaning to buy a spoon rest and what nicer one could I ask for? A trophy of sorts that, in future years, I can look and and think "I walked a LOT that day!" and hopefully that memory will make me smile.

I picked out one for me, one for Mom and let my sister pick her own.

We forged ahead.

After several minutes of seeing stupid T-shirts for sale and dog toys, and handmade wooden furniture... I suddenly realized my legs were screaming "UNCLE!".

"You want to go back now?" my sister asked, as she noticed I was no longer moving forward but rather standing still staring glassy-eyed at the endless corridor of booths ahead of us.

"I'm done walking," I said. Trouble was, I wish I would have known halfway to that point that THAT was all the walking I wanted to do. That way I could give out exactly as we made it back to the car.

My rubber chicken legs managed to carry me (without too many antics) back to the car via crossing the street down by the light. No more scary pigeon poop, spiderweb, and god-knows-what covered walkways beneath bridges. We leave that to the trolls.

As we were strapping on our seatbelts, my granddaughter said "Look! Just in time!"

We all looked up to see the black cloud in the sky split open and pour it's guts out on the Blue Crab Festival.

As we drove away, my sister and I reminded each other that no matter what we might think NEXT year, we really DON'T want to do this again.

Too many spoons used, not enough return. (if you don't know the spoons theory, you can read about it by clicking here).

If I could have walked another 10 feet or so, I probably could have gotten that guy in the T-shirt booth to make me one that said "I survived another stupid festival and all I got was this overpriced T-shirt".

Secretly, tho, I am ecstatic to be able to complain that I WALKED AROUND at another moronic festival. It's better than not walking around at all. Which means that, despite the fact that I know it will suck, I'll probably try it again next year.... just because I can.

Saturday, May 23, 2009

Time once again for the Blue Crab Festival

Saturday, May 16, 2009

Regenerate Myelin?

Interesting article I came across today...

Researchers Identify Pathway To Reactivate Myelin Repair

Article Date: 13 May 2009

UMDNJ researchers have identified a key pathway that could lead to new therapies to repair nerve cells' protective coating stripped away as a result of autoimmune diseases such as Multiple Sclerosis (MS). An article reporting their findings will appear in the May 13 online edition of the Journal of Neuroscience.

Myelin is fatty material that coats and protects the ends of nerve cells. The loss of myelin and myelin-producing cells impairs the ability of nerves to conduct signals. A severe loss may lead to erosion of nerve tissues and result in permanent damage.

"In people with MS that is relapsing-remitting, the body can replace myelin that has been stripped away," explained Teresa L. Wood, Ph.D., the study's lead investigator. "But, after repeated attacks, that process of replacement no longer functions well," she added.

"Our data demonstrate that a novel cellular pathway, called the mammalian target of rapamycin (mTOR), regulates the generation of new myelin-producing cells (oligodendrocytes) and the production of myelin in immature rodent cells," Wood said. She is a professor in the Department of Neurology & Neurosciences and the Rena Warshow Chair in Multiple Sclerosis at the UMDNJ-New Jersey Medical School.

More work is needed to determine if the key to reactivate remyelination is to stimulate the pathway or if environmental impediments, such as inflammation, also must be overcome to allow the pathway to function normally. "Now at least we know a target to go after to promote repair," she said.

The researchers' work may also lead to new therapies for other disorders where the myelin-producing cells are affected, such as autism, Alzheimer's disease, and perinatal brain injury.

The University of Medicine and Dentistry of New Jersey (UMDNJ) is the nation's largest free-standing public health sciences university with nearly 5,700 students attending the state's three medical schools, its only dental school, a graduate school of biomedical sciences, a school of health related professions, a school of nursing and its only school of public health on five campuses. Annually, there are more than two million patient visits at UMDNJ facilities and faculty practices at campuses in Newark, New Brunswick/Piscataway, Scotch Plains, Camden and Stratford. UMDNJ operates University Hospital, a Level I Trauma Center in Newark, and University Behavioral HealthCare, a statewide mental health and addiction services network.

Friday, May 1, 2009

Pill vs Shot

Just yesterday I was wondering if I took my pill already. I do that a lot. I need to use a pill box and then check to see what day it is and whether or not my pill for that day is gone.

I do use both Google Calendar and Yahoo Calendar reminder emails set to send out at 9am every day. I'm usually sitting at the computer so that works out well. But I had to make a plan to get up as soon as I see the email, take the pill, and then delete the email.

I seem to have a lot of short term memory issues and find that sometimes I get up, go to get the pill, realize my coffee needs warmed up so I can have something to swallow the pill with and I busy myself with refreshing my cup... only to find that I sit back down at the computer with a steaming cup of decaf and no pill.

I go back to checking email and see the pill reminder again. Then I sit there in a panic trying to rewind the DVR of my life to see if I took it or not, only to realize my life has no DVR or rewind button and what I see is that snow you get when you forget to pay the cable bill.

So, I now realize that the shots actually HAVE one up on the pill in the reminder category.

I never had to have a reminder email to do my shot. Not when I was on Copaxone, and not in the first part of this Phase III trial when I was *supposedly* injecting Avonex once a week but it turned out to be a healthy dose of IM water, no doubt. (I won't know until August, but I'm fairly certain I've been on fingolimod the whole time).

So, if I were sitting here wondering if I took my SHOT, I could just pat myself down until I found the sore, welted spot. The shot wins in the "I Know I Did It" department.

I think when I am done with the trial and go back to facing a choice in medications I'm pretty sure I'll opt for more email reminders or cellphone reminders or some other foolproof routine to use over the itchy, bruised, sore, welted shot reminder. True, it works well, but still.