Merry Christmas!

Ok, there is lots to be filled on from the past couple months that I've been AWOL. But now is not the time. Now is the time for an early Christmas prestent, in the form of a very funny blog. Just a heads up, Elaine and Gary are a ficticious couple with some rather ridiculous decorating tastes. Thanks to Tirzah, who informed me of the entertaining site. Enjoy!

http://catalogliving.net/

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.

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.

Care Package

Shane showed up from work yesterday, generally he calls first to let me know he's on his way. But he just showed up so it seemed like a really good surprise. And then he further surprised me with this care package.

He definitely knows the way to my heart.

They were still beautiful and fresh looking this morning. Probably because they stayed nice and cool. The weather is feeling very fallish and I think soup weather is not far off. Which is ridiculous.

After teh big kids cleaned the kitchen last night, I found someone had set up and was planning to make hashbrowns for breakfast.

Complete with a set table for the four kids. Note the stack of books by Audrey's plate.That would probably be enough to get her through breakfast.

When I went to say good night to the kids and praise them for their good work on the kitchen, it was really sparkling, I asked who had done the breakfast prep, thinking it was Cyril as he loves hashbrowns. Turns out they didn't know about it. It was Kateri. Who also had her  morning outfit picked out and folded next to her bed. I could really learn a lot from this girl. I hear her shredding the potatoes right now. I'm thinking I'll just hand over the management of the house to her this year.

The Last HairBender

Shane took us to dinner and a movie last week. The movie was The Last Air Bender, which, for not being all that great, had me captivated for a good spell. Actually, it was Kateri that was captivating. I noticed her moving around a lot, and when I turned to see what she was doing, found she was moving her arms in graceful arcs and spirals, like she was giving some sort of  benediction to the empty seat in front of us- I guess the other viewers read the reviews first. Which was unfortunate, because Kateri was quite the show.

She sat, eyes intent on the screen, watching every move the 'benders' were making to contort the water to their wills. She mimiced every sweep and wave, and then some, adding a flourish here and there. Personally, I thought hers was better. I motioned to Shane and we both sat, mesmerized  by her actions. Suddenly, it was the best movie ever.

I was thrilled when we went to the beach later, and she tried her bending skills on the Puget Sound. It doesn't show in the picture, but she was able to conjure up a bowling ball sized orb. She had her back to me, so I couldn't really see it either, but she was happy and excited to find out that she was a water bender.

She has decided to take a year off from her dancing career. A move I whole heartedly endorsed. I was not at all pleased with some of the 'older girls' numbers at the last recital. But I am seriously considering putting her in a tai chi class. It might slow down her realization that she is a 'will bender' as well. A power I think she is not at all ready to take on. And I would love to watch the practices.

Home Again, Home Again

This past week was very busy with just little amounts of time un pack, pack, and leavea again. Right now I am  attacking the mountain of dirty laundry that has piled up, but don't think I'll get to the summit today as I'm running out of detergent and its way too hot to drag the kids to the store.

Speaking of hot, Shane and I got to take a vacation to Portland this week end, where it was in the 90s. And we were at an outdoor concert. But it was so worth it and luckily there was a breeze most of the time. And when there wasn't, I used my paper plate for a fan.
And because it is hot here too, I'm going to have to tell most of our week end in pictures.

Xavier Rudd was first. It was fun to see him again, though he only got to play 5 or so songs, and not any of my favorites from his latest album. But it was still neat.

Rodrigo and Gabriela were amazing. And afterwards we got to shake hands with both of them. I felt the front row ticke price was totally worth it. They were really fun and incredible musicians. I felt really inspired and have since learned how to play a C major  chord on a ukelele.

Before the concert we wandered around the grounds.

Sat in the cool tasting room,

and tried to stay in the shade when possible.

After the concert we were on a high. Not that kind, but form the smell of the air I think others were. So we stopped in at one of the bars,

For mojitos,

and broiled figs with cheese and balsamic.

When traffic cleared, we headed back to the hotel. And still not being tired, we sat in the bar and had a drink and several tasty appetizers. Then finally feeling satisfied, we braved the "Elevator of Death" to get to our room.

The elevator had this super annoying and surprising habit of shutting  two seconds after it had opened. Shane had a close call but after that we were always careful evaccuate as quickly as possible and there was no further injury.

 And here is the watermelon and feta salad which I'd been dreaming about since our last stay at the Governor a year ago. I think they changed the dressing on the frisee, but it was still amazing and we got to have it twice.

But before all this went down, the whole family went to Lake Wenatchee for a reunion and memorial and getting to know cousins. But, since it is so warm, I'll have to save that one for tomorrow. And I think the dryer is about done.

Just Checking In

I got to see Dr M today. Unlike dentist appointments and shots, I always look forward to visiting with Dr M. I didn't have too many wild and crazy theories to discuss today. Mostly it was just to do a three month check up of being on the LDN. He said I could stay on it for now and we'd see if the MRI in Sept indicates a need for something more drastic. And then I'll probably say no.  As usual I aced all the little tests. I think. The walking heel to toe was sort of off, but I had flip flops on. Once I took them off it was fine. My legs were a little sore and stiff from working out yesterday so my gait might have been a little off.  I explained it though. My weight was a little up from last time. I think it is probably just due to the time of the month. I didn't explain that.

Then he had me do the close your eyes, put your arms out, touch your nose. I assured him I had not been drinking. Then he looked at my face. Intently. I started to feel a little under the microscope. Did I forget to wash my face? What had I eaten for breakfast? He told me to close my eyes. I couldn't help peeking just so I could see his expression. Which didn't give anything away. He told me to smile. Finally, satisfied, he said,

"Ok. You can relax and have a seat." 

I asked what he had seen or was looking for.

"Oh, it was nothing."

I asked what the 'nothing' was.

He talked about seeing things that might seem off or clues to somthing bigger. Like a person with one scuffed shoe, who obviously drags that foot and other things a detective would notice. Finally he told me it seemed one side of my mouth seemed more expressive than the other. But upon closer inspection, it was 'nothing'. I still felt self conscious everytime I smiled and I've been checking in the mirror since I got home. Nothing.

So that was all good and I'll get to see him again in two months and I can stick with the LDN. So I'm happy.

On another note, this is the wine chosen for a recent wedding. It was only $4.99 at Trader Joe's and its pretty tasty. I stopped to pick up some more after the doctor visit but the Kirkland one was out and the wine guy told me the distributor is out as well. So if you find yourself at Trader Joe's you might want to pick some up, if you can. The Redmond one still has some. I haven't checked the other local stores.

Shane came up with a fun activity for the kids and asked me to get some mini marshmallows and tooth picks at the store. This is Cyril's creation.

This is Cyril's creation  on fire. No questions.

And that's life at the moment. Sticky, sweet, and on fire. Not sure how that really fits this moment. But, oh well. There it is.