Friday, March 25, 2011
Too Creepy To Not Share
This was a video featured on WheelchairKamikaze's website. It shows how the fungus cordyceps acts on insects. The same fungus has been used for centuries in Chinese medicine, and more recently a derivative is used in Gilenya, the new oral MS medication, which I had decided already I am not interested in. And that was before I wondered if there might be a chance I could have mushrooms sprouting from my brain as a result. So far I am pretty sure there are no reports of such things, but the medical community can be very slow. Who knows.
Sunday, February 27, 2011
Creamed Corn Brulee
This made 8 large- 10oz ramekins-brulees
2 ears corn kernels
2 Tablespoons butter
3 1/2 cups heavy cream
1 c whole milk
10 egg yolks
1 cup or less granulated sugar plus
coarse or granulated sugar for dusting tops
First, sautee 2 ears of corn kernels in some butter, until the kernels get golden and a little brown in places.
Friday, February 18, 2011
Lone Star
Not a very good picture, but it was the last opportunity we had so I was glad to at least get one.
All in all, it was lovely trip, the only hiccup was when I realized as we pulled into the airport, that I had left the girls' gifts in the dresser drawer. Fortunately, other people plan for these things and when I called, the hotel said they'd FedEx them to the following day. We found some stand-ins at the airport, and the girls had a package to look forward to. So it worked out.
Wednesday, February 16, 2011
Still Here, Old Boy
This most recent weekend, we took a trip to see Great Grandma Mac to celebrate her 90th birthday. We actually missed her party by two days, but with us there, cousins and aunts and uncles dropping by, and Grandma Trudy's cooking, every day was a party. The kids were so sad to come home. It is pretty bad on our part, but I realized that was the first time Pippin had met Grandma Mac in person and the the kids were shocked to find they had cousins they'd never met. They all got along great and are begging to go back again soon. We will definitely will not wait so long the next time.
The pictures decided to arrange themselves, so in no particular order:
We got to have a power outage, which it always fun. What's better than eating Grandma Trudy's Chocolate cake with Chocolate Ganache? Eating it by candle light.
I'm representing Shane in this four generation picture.
This was supposed to be at the end, along with the recipe. We made this for a big dinner we had with friends and I have been craving and making it ever since. I didn't know kale could be so tasty, But I suppose when you add bacon and cheese with candied nuts, what wouldn't be tasty? Recipe is below.
Kale and Apple salad with bacon and pecans- and lots of other tasty stuff.
For the pecans- toast 2 cups nuts in a saute pan with 1/2 cup sugar, 1/2 teaspoon cayenne pepper and some butter. About 8 min on med heat, maybe less.
For the salad,
cook 8 slices bacon finely chopped until nice and crispy. Remove the bacon, saving the oil in the pan.
Mix about
1/4 cup of the oil with
1/4 cup white wine vinegar
2 tablespoon capers brine ( from a jar of capers)
3 Tablespoons maple syrup
some black pepper.
I put it all in jar with a lid and shake really well.
For the salad:
1 8 oz bunch kale, stems removed, leaves finely shredded
1 large head radicchio, shredded- I leave this out sometimes and it's still good
3 Tablespoons snipped chives
1Tablespoon chopped tarragon - this part smells really amazing
2 granny smith apples cut into matchsticks
2 oz shaved pecorino
Toss everything but the cheese with the dressing. Or leave out the bacon and nuts as well to add at the end. Arrange cheese on top. I like to make a big batch of this without the dressing added. Kale keeps better than shredded lettuce. I love having it for lunch the next day. And the day after that. Then I have to go to the store for more provisions and I start the process all over.
Coming soon: a trip to Texas wine country- yes there is such a thing, I was shocked too
a trip to the snow where Kateri made snow angels, in her bathing suit
a few birthdays- kids and adults
a trip to Japan- Shane, not the family
and a few new house furnishing/rearranging
Saturday, December 4, 2010
Merry Christmas!
http://catalogliving.net/
Tuesday, September 28, 2010
Going Dark
Or whatever it is that Jack Bauer does on occassion. Or, I've come across some new and interesting reasearch and I might be consumed with tracking down articles and such and might not be updating things here as often as I'd like.
Surprisingly, this was all the result of my last dr visit and my eventual decision to not take any of the drugs right now. Except for the LDN. Reading a bit more of the risks and not feeling quite desperate enough to try them helped a bit too. As did the latest news story I read suggesting MS may have a very different cause than what all the drugs are predicated on. An MS Drug shirt would say "The immune system is evil and must be punished' or rather killed. My brother in law had a shirt with a similar saying only it was liver that needed punishing. It was a drinking shirt, needless to say. Well I like my liver and my immune system so I'm not taking either drug. And then this morning I read this article:
http://www.msra.org.au/australian-researchers-reveal-ms-not-myelin-disease
Which suggests the cascade of events leading up to demylenation may actually begin with astrocytic necrosis induced by anti-aquaporin-4 antibodies. And not necessarily the result of the immune system turning cannibalistic and eating all the myelin. The cannibal part sounds ok but astrocytic necrosis clearly wins the day in cool, freaky terms. So I'm going with that one. The recent findings, although there have been some similar Japanese studies earlier, was done by Dr Prineas, whom I've read about before. So I liked that.
Anyway, I might not update for the next couple days. Or shower. Or cook. Luckily the kids love and fight over the new vacuum cleaner so I know the rugs will get cleaned. And we'll get our schoolwork done too. But otherwise I think I'll be consumed with reading more about the new research. I'll get to see Dr M in November, and that will be fun. But it is a ways off. Especially when I have something exciting I want to discuss. Or maybe I'll hire Audrey to keep things up to date here. I think that's what I'll do.
Thursday, September 23, 2010
Gilenya or Tysabri? Decisions, Decisions
And no. Those are not names for future little Pattons. Although I could see a TV series 'Gelenya, Princess Warrior' being a big hit. Actually, those are the names of the two drugs I am supposed to choose between. So says my neurologist. I had a different kind of visit this time and I can't quite put my finger on why, but it was not very satisfying or inspiring. Maybe it was the fact that I wore my PJ's. Maybe it was just that time of the month. Or maybe it was the vegan cookie I ate for breakfast.
The morning started a little crazy when I called to confirm my MRI appt, as they had not called me the day before. As is their cutsom. To call, that is. Anyway, I did indeed have a 9:30 appt, but they were super booked as one of the machines had not been working the day before and they were trying to fit everyone in. The tubes are not that big and it was creating quite a back up. The receptionist asked how quickly I could get there.
I said 15 min. without traffic. But it was 8:00. So there was bound to be traffic. And I was still in my jammies.
'That's fine. We'll put you in scrubs when you get here. Just hurry.'
Jammies are well suited for MRIs as there are no magnetic fasteners to interfere. So I took a quick shower, had a sip of coffee, packed a change of clothes, and arrived in my pink flannel pants and t-shirt. There was traffic. So I cheated, never mind how, and got there in about 15 min.
They had the nice warm blanket ready for me and nobody gave me funny looks for my unbrushed hair or my PJs.
I chatted with the technician as he put the IV in. He asked how my MS was doing. I didn't know he knew. I suppose it said on the order somewhere. I told him I didn't know. I guess we'd find out. His cousin was diagnosed with MS a month ago. And is in a wheelchair already. I felt a little sheepish being able to hop on and off the MRI bed no problem. Especially as it has been about 19 yrs.
Afterwards I got dressed and found a comb in my purse. So my hair looked bettter. Not stellar. But better. I wasn't meeting Dr M for two hours, so I headed to Trader Joes for some snacks, then to Tully's for coffee and perusing of the WSJ, which I had had the presence of mind to pick up on the way down the driveway. Then I worked on my list of discussion points before heading up 30 min early to see Dr M.
The receptionist told me they could not find my appt- I had called them before I left to confirm as well-but that they got the MRI report and he could see me right then. So he did. I was a little disappointed as well that he didn't run the usual battery of tests. I had specially chosen my shoes to facilitate the walking heel to toe one. Also, last time, the nurse informed me that looking at your feet makes that one more difficult. So, if you ever need to, just look straight ahead.
I think maybe he was a little crunched for time, and that my have influenced the feel of the visit. Or maybe he was having a bad day. Or maybe it was any of the above listed reasons. I don't know. The long. or rather short of it is he saw some persistent black holes on the scans- they were there in April-he does not put much stock in the 'diet as therapy' approach, so I decided to stop giving up dairy, and he'd like me to go on one of the stronger medications. Hence the fancy post title.
I did tell him that the left side of my face has felt a tiny bit odd. He said that was the side he was inspecting last visit. And my throat has not gotten better. Actually, I'm not sure about that entirely. I think it may have a little. But then again, I could just be used to it. He said relapses usually last up to 6 weeks. Longer than that and its probably a permanent thing. He also reiterated that 90% of people go progressive in the first 20 yrs. After which, none of the medications can help. Of course there is that other 10% . But he expressed that he felt my case warranted some second line medication. He gave me my options and two months to think about it. Unless I decide sooner and call to tell him so.
I'm not thrilled about either option. Gilenya, sweet as it sounds, lowers your heart rate- you take your first dose at the hospital where they monitor you for 6 hrs. Then you take your colored pills and go home to try it on your own. It has nice side dishes of skin cancer, pulmonary issues- shortness of breath, coughing, pneumonia- edema in some part of your eye, which can lead to blindness, increased risk of infections, and there have been two deaths. Something about chicken pox. Which I had already, so that makes me safe. I think. Originally it was called 'fingolimod' and is somehow derived from a chinese fungus.
Tysabri was well publicized a few years ago and pulled from the market as there were deaths caused by PML, a nasty brain infection. They think, now, that they can limit your chances of death by more monitoring.' Oh look. We were monitoring him. And now he's dead.' That last bit sounds a lot funnier if you read it with a British accent. Try it. That's how I wrote it, and I thought it was funny. I was actually wondering the other day why it is that the Brits are so darn funny. And I don't think it's just the accent. They just really are a funny lot.
OK so they don't just monitor you, they can seemingly treat you if they catch it early enough. And they try to limit the time you are on the drug as every bit past 2 yrs or so increases your chances for death. So you sometimes take 'holidays' for a few months. But who knows what accumulated use might do to you. It has not been around that long. But is has been around longer than Gilenya and is just a monthly infusion so not that big of a bother. Granted you're not killed by it. So actually I feel a little leaning towards it. I don't know what hell hole it was discovered in. I'm pretty sure there were no chinese herbs, fungus, mice, or spam involved. But I really don't know the secret recipe. It also has risk of other more benign infections as well.
There is a third drug I'm interested in 'laquinomod' but it won't be available til late next year, given it doesn't kill off all its trial participants. So I could pick one for now and maybe switch later. It's really difficult to choose. Pick your poison is definitely how it feels. But I have some time to research and sort it out for now. And I'll be having half and half and butter or whatever else suits my fancy while I deliberate.