Saturday, December 4, 2010
Tuesday, September 28, 2010
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:
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
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.
Saturday, August 21, 2010
Tuesday, August 17, 2010
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.
Monday, August 16, 2010
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.
Wednesday, July 28, 2010
Monday, July 26, 2010
Guess who is going to have a birthday?
Kateri has been planning her birthday pretty much since the day after her last birthday. She has invited anyone and everyone, even though she has not decided where the party is actually going to be. Our house or Grandma and Grandpa's. She decided she wanted me to take her shopping. I had to run to the drug store so she came along and I told her she could pick something. She picked out a little travel toothbrush with a bright pink case and tube of toothpaste. I know. I got off easy.
Then she decided Grandma could take her shopping too. So yesterday, Grandma had some time and took her shopping and out to dinner. She came home with a royal wardrobe and lots of trimmings and trappings for the big day. And of course, she will assist Grandma in making the Giant Pink Princess Castle. Just like last year. Because Grandma doesn't get enough practice making big cakes. (That is a big joke around here. I can't even count the wedding cakes she's done so far this year.)
Anyway, these are a few of her new outfits.
Monday, July 19, 2010
And the back yard smells like poop.
Its kind of a drag to think about,
This might be the best this summer gets.
A couple weeks ago, the kids convinced me it was a good time to get a swimming pool. There were hot days coming and the run on pools had not happened yet, so I agreed and we headed to Plastics 'R' Us, whick was still pretty well stocked. Of course that only makes it more difficult to choose, having more than one to choose from. I was thinking the little inflatable one or two ring pool would still work for them. They reminded me that there are FOUR of them and they wanted to get more than their toes wet so we started looking at the larger pools. A lot larger.
They liked the floating rim one. I envisioned a kid getting stuck under the floating rim. They liked the four ft tall one, I envisioned being paged for heavy lifting everytime the younger ones wanted in or out. We finally settled on the 3 ft tall x 12 ft diameter pool. Then I thought I should double check with Shane and ask how much lawn we were willing to give up. He pointed out we we don't have much lawn, mostly clover and dandelions and he didn't care how much of it we drowned. The other 'feature' of our yard is that it is mostly clay with a clover veneer. So it doesn't drain much. Or at all. We decided we could turn the left side into a swamp, so I hauled out the huge box, plopped it in the car and away we went.
With the two big kids helping, set up was pretty quick. Filling it up, no so fast. But eventually it was enough for them to splash and swim in and they spent the rest of the day in it. And the next. Then we headed down to the property so we had to drain it. At first the almost 2,000 gallon capacity seemed cool and luxurious. But when you go to drain it, its kind of a pain. Luckily it has an attachment for a hose so at least we could spread it around.
Well, it has been too cold since and we have not filled the pool again. There was one warm week-end, but we were away. Apparently it got very warm. It was at least hot enough to give one of our little lizards heat stroke. At least that was our guess when we found her sunken-eyed and super stinky the next morning. I got to use one of my snowman cookie boxes again. Our back woods now houses a pet cemetery and it is hard to not step on hallowed ground, which Cyril gets very offended by. I guess we should build a fence around the graves.
But back to the other offending odor. We decided we should move the pool, since it was drained, and maybe give the clover a chance. It looks ok when it is mowed. So last night we flipped it over on its back side, its 10 metal legs all sticking up in the air like a dead animal. And from the deceased clover patch came a stench, much like a dead animal. There was no safe place in the yard so we rereated into the house gagging and laughing. We suddenly remembered the summer before when we had just done the same for our old pool, thus releasing the toxic smell into the air making our back yard off limits for at least a week. Then that night, our neighbors decided to have a big party in their back yard. They have dogs so we could just imagine what all the guests would be sure they had just stepped in all evening.
But lucky for them, this is no summer party weather we've been having. If it lasts a week, we might be get away with it. Its still pretty ripe this morning, I had to take the garbage out, but without the sun heating and intensifying it, it might not last as long.
Wednesday, July 7, 2010
Tuesday, June 29, 2010
Operation Laundry is proceeding as expected. It is currently in its second wave. There is confirmation that a smaller target, operation unpack, was already completed earlier and has already yeilded returns totalling in the $.75-$1 range.
Operation Laundry is expected to last into the late afternoon and possibly into the next day, if needed. Officials say they are 'sticking with it to the end'.
Opreation Carpet Bomb was also considered as an option, but was summarily dismissed due to the very high collateral damage anticipated.
Operation Toilet Bowl Sweep, on the other hand, was carried out eariler this morning with complete success though it is anticipated the same maneuveres will need to be repeated in the future on and on-going basis.
"This is not a bad thing, or a sign of failure" high level officials are saying.
"This is more of a precautionary, or pre-emptive, if you will, move. But we feel such actions will decrease any future disruptions due to unsightliness 99-100%. Which in this situation, we consider a complete victory and absolutely worth the small effort. We are also training the natives so in the future they can take ownership."
Experts are also being consulted on ways to mitigate the necessary frequncy of this response by educating the newer troops on the benefits of good aim.
Re-building efforts are already underway, with clothing, food, and any medical assistance necessary being provided on demand. A speedier response will reach those who say please and don't whine.
So far, insurgents have been few and when dealt with swiflty and firmly, have so far shown a willingness to reform and co-operate. However we have gotten word troops on the ground are calling for more soap to combat inflammatory or disrespectful language.
So far, all those involved are calling the efforts a success and do not anticipate any setbacks.
"This in not a perfect situation. We can't rule out surprises or side effects of say, running out of coffee. Things may arise and mandate we take a different tactic. We're agile and can adapt to such things as having to make a coffee run occasionally. And we're very quick to get back on track and stay focused on our ultimate goal. Clean House."
Officials also tell us more is going on that at this point they are not able to disclose. Wanting to maintain good relationships with all those involved, they feel it may have undisireable repurcussions to have complete transparency.
"This is a highly sensitive situation and we feel that information on a need-to-know basis serves everyone best. And who is really going to miss the 3-limbs-missing doll or the trailer with one wheel? Seriously. This is in everyone's best interest."
Saturday, June 26, 2010
Tuesday, June 22, 2010
We've been fairly busy the past few weeks. Unfortuantely, not a lot of it has been due to the sunny weather. Actually, today was the first time I had to water my plants. Hopefully its the start of a new trend. It's hard to believe it is almost July. You certainly would not have guessed it from the weather.
But we've been finding ways to keep busy. We are done with school and into our summer schedule. Which means we're free to go wherever the day and our whims take us.
Except Mondays, when I have a chiropractor visit and then we go to take care of the miniature horses:
Tuesday, June 8, 2010
We are rapidly losing interest in things like math and phonics. Cyril finished his reader yesterday. Audrey has a few more math lessons and I am looking forward to calling it quits. I was looking forward to a slower pace for summer. But then I signed the kids up for summer swim lessons, made chiropractic appointements for 2x a week, and we are continuing taking care of the horses once a week. Somewhere in there we will fit trips to the beach and other summer activities.
I've been super spacey the past few weeks and a litte on the grumpy side. Yesterday I had an appt with the chiropractor. Luckily Shane was able to work from home so I didn't have to haul the 4 kids with me. When I got in the car the "empty" light was lit up. But when I saw the ramp to the free way was already being light controlled, I figured I'd better not stop. It is crazy that a 12 min trip took 20 min,. At 10:00am! I got my last cel phone call while driving in, and the office said to come anyway.
On the way home I got lost, which is not unusual for me, but kind of ridiculous as I've been to the same building to see my midwife for three pregnancies. When I finally found the AMPM the silly card reader acted like it was not really a card reader, just a decorative slot for you to slide your card in and out of multiple times without giving you the slightest aknowledgement. Rather irritated, I darted across four lanes to the other gas station, which was far more responsive, and finally filled up. Then while sitting at the light, my phone rang. It has had this habit lately of hanging up and shutting off when I push the answer button. And as expected its usual performance. I saw it was Shane but didn't have time to boot up, enter my password, and dial before the light turned green. I was so frustrated I fantasized about smashing my phone repeatedly on my steering wheel. I could just feel the case cracking as I bludgeoned it again, and again. At least the visual made me laugh. Kind of a laugh cry though.
Finally it connected a minute from home. It was Shane again, worried and wondering where I was. I told him the appointment was a little longer than I expected and I had gotten lost and had to stop for gas. Then I ranted about the phone for a bit and I told him I was ready for a new one. He's been wanting to get me a Kin. I feel a little old for one, but if it is super user friendly and won't keep dying on me I'll take it.
I decided it was a soup kind of day, the rain had not left us yet. Just as I was sauteeing the shallots the doorbell rang. I left the pot and ran to open it, thinking it was one of the kids and would just be a second. No. It was a salesman. I told him I was in the middle of dinner- it was 6:00, what did he expect?. He said he'd just make it real brief. He was going to be doing some pest control in the neighborhood and since he's already be here he could give me a "really, really good rate". He had just signed up my neighbor "Doug" who had to replace his patio and was signed up for a spider control treatmen.
Firstly, I don't know of a single neighbor named Doug. Secondly, all the houses around here have aggregate patios- which I loathe with passion, and I'm not sure what spiders could do to them. Thirdly, my shallots were going to burn.
I told him again, I really had to go. He offered to come back. Actually , he just stated that he would come back. So I told him,
"Don't bother. We really don't need your services."
"You mean you don't have any pests you want to get rid of?"
"Just door-to-door-salesmen" I answered.
He look confused a second.
"I'm sorry. What did you say?"
"Nothing" I said. Feeling kind of remorseful for being snippy. But really, why is is impolite to communicate in a "this can't mean anything else" way, but a sales man can trespass on your property, waste your time trying to get rid of him, and try to make you feel like you need whatever he is offering. I told him seriosly, I was in the middle of making dinner. Thanks but no thanks. And finally shut the door
The shallots didn't burn. But I did burn the garlic twice and had to re-do it. Maybe I deserved it.
This morning after breakfast the kids looked out and saw in the swing set area a large rat loafing around. I had to wonder if possibly it was a set up. I think a pellet gun will be fine for pest control.