The door slides open. I imagine the sound track it should be making, and in walks Dr M. I am so thankful he's my doctor. Of all the neurologists I've worked with he is the most agreeable, accessible, and from what I can tell knowledgeable. He never rolls his eyes when I tell him I've read something on the internet. He takes my concerns or even just opinions seriously. And he is very willing to meet me where I'm at and work with me from there.
Today I'm really excited because I have been reading some new things I want to discuss. First he pulls up the MRI scans and we go over those noting any new areas of concern and checking on the old ones. A new one in the brain stem seems to correlate with the swallowing issue I started having a few months ago. He explains the other areas of interest as we go up the brain stem and out the top of my head. I had tried really hard to hold super still, and also to keep my eyes shut so my eyeballs would not be rolling around. I can't remember if I did a good job or not. I was too caught up in my research and wanting to share it with him. He finishes with the pictures and I start right in.
"So I was doing some research and came across the work of Dr Prineas, the Australian pathologist. In reading them it seemed to raise the question of MS being an autoimmune disease, or at least challenge the current way we think about MS."
"Well, its is pretty well established that the damage comes from the bodies own doing. All the working therapies out there are predicated on that and they seem to work."
"But not for everyone. If interferons really work, why don't they work for everyone?"
He sat and thought.
"Dr. Prineas' studies seem to point to damage occurring BEFORE the immune system kicks into gear. Meaning it comes from somewhere else. Could it be that axonal damage comes from the macrophages death possiby due to a misstep in a protein to estrogen conversion. And their death results in myelin loss and the T cells and B cells just show up to do a mop up job? And that by the time we see any activity it is always the immune system caught with the smoking gun. This might explain the gender inequity and why it is far more common in women than men."
He sits back and closes his eyes. Dazzled by my research capabilities I'm thinking. He opens them, then goes to his computer and starts pulling up files. He mumbles something about lymphocites and some other little guy. I just watch him work. He seems to be in his own little world and I don't want to interrupt him or ask questions. I catch something like 'how can this be, in a few months, she has discovered what we have not deduced in a life time of work?'
"I have heard of Dr Prineas, and his work is interesting. You bring up some fascinating points. But we'd need Dr. Prineas to answer some questions.What is he up to right now?"
He clicks on a little tab and a live camera feed pops up.
"There he is" Dr M exclaims. "It looks like he's going somewhere with that suitcase. Where is he going?" He seems to be talking to himself so I just listen.
"What's that in his hand? Maybe a ticket. I'll zoom in. And enhance. And gotcha. Its not a ticket. Its a map with a route marked. Looks like he going to San Francisco. But why? What is in San Francisco?"
He pauses, his chin resting in his hand. He jumps forward again.
"He dropped something. Let's take a look at that." Once again he zooms in. It appears to be a letter. From his daughter.
"Looks like he's going to visit family. Maybe we can intercept him at the airport. Can you take a trip to San Francisco? I think you should explain your hypothesis in person. I think the puzzle pieces are all there and Dr Prineas will be able to help put them all together. We can set up a meeting at the French Laundry. This may be the discovery of the century. I think we'll need a good bottle of red and something tasty to celebrate it."
I tell him no, I can't go to San Francisco tonight. I have more research to do. And I am making tacos for dinner. But he needs to go. He can conference me in and I'll have a power point presentation to show both the doctors by dinner time.
He congratulates me, thanks me, then gathers his papers and laptop and rushes out the door. And I think what a fitting end that little swooshy noise would have been.
OK. So we've been watching 24 lately and I decided to borrow a few tricks I picked up. Especially Shane's favorite. The Zoom in and Enhance method. But some of this was true. When I get the final debriefing from Dr M- who first has to be debreifed by the radiologist- I'll sort the fact from fiction, if I can, and lay it all out next post.
Friday, April 30, 2010
Wednesday, April 28, 2010
Brain Day Part I
I had my MRI and neurologist appt yesterday. I am waiting to get the full report from the radiologist so I figured I could string out the day in a few installments.
In the morning I'm excited to drop off the kids with Grandma and head on down for some "me" time. Me time being me, by myself, lying down. I can't get up even if I want to. Which I don't. I like getting MRIs.
I fill out the paperwork, then pick a chair by the fire and settle down to read the paper.
They call me soon and give me a dressing gown, only it's pants and a top. And only like 10x my size. Luckily it has a drawstring so I cinch it as much as I can then wrap the cord around several times and am good to go. Next they put an IV port in. I liked the way they did it before. Just come in and give me a shot half way through. But I guess they found the scans were more stable or something if they didn't have to move the person and could just press a button to inject the contrast agent.
Last time the guy putting it in didn't get something quite right and when he tested it blood went squirting all over the floor. This one goes just fine, with only a small bruise leftover this morning.
So then we go to get set up in the machine. I lay down on the sliding bed and the assistant coveres me with a heated blanket. I instantly feel realaxed and cozy and am looking forward to some"quiet time".The technician informes me that they are no longer able to use the music playing headphones, just some small ones for ear protection.
"That's ok. I usually don't have music with mine anyway."
"So you won't be able to talk to me then?" I ask hopefully. It was always kind of jarring when you are just starting to relax and then "OK This one's going to run about three minutes." Or six minutes. It kind of interrupts the 25 min of meditation I try and get.
"Oh, no. I'll be able to hear you ,and let you know what's happening."
"Actually, I don't need any updates or anything."
"You have kids?" he asks.
"Yep. Four."
"I figured. Usually the people with kids just want quiet."
"Ok" he says, placing the squeezy alarm/eject thingy in my hand and adjusting the IV bag. "I'll get out of your hair and we'll get this done."
I lay back and he straps the head cage across my face.
"You're not claustraphobic?" he asks.
"Nope." I close my eyes." I'm good."
He leaves and I feel the table slide into the big magnetic tube. Its dark and cozy and I could see how someone might get freaked being in there. But I'm glad I like it.
A few seconds go by and I hear the whirr of the machine with the familiar tweets and knocks. These first ones make me think of little StarWars ships firing at the Death Star in short little bursts. Pew, Pew, take that Vader.Then along comes the deeper laser beam in long steady pulses. The big ships are coming.
The beeps give way to a series of knocks. Usually a knock in the middle of the night heralds a wet bed or sick child. Something that requires my immediate action and gets my adrenaline going. But this time I know I don't have to rush to the door and am able to stay calm. And relaxed. I think about how nice it is that they give me warm blankets. I time my breathing to the rythm of the machine. Then I add a prayer.
Lord Jesus Christ (Knock) Son of God(knock) Have mercy on me (knock) a sinner (knock).
The knocking speeds up and my respiration matches it.
There is a pause. I hold my breath, waiting for my cue. Instead, I feel a cool sensation in my left arm where the needle is. It radiates up my arm and I know they just injected the gadolinium and we are doing the second part of the scan. I'm glad they did not get to interrupt and tell me "Ok, you're going to feel a little coldness in your arm now."
The knocking starts again and I settle down to enjoy the little bit left. I'm thinking fresh warm blanket would be just nice right about now. I wonder if they would bring me one if I asked. But too soon, the door opens and they are sliding me out and unlocking my head. They remove the IV and wrap it tighly with a cotton ball and stretchy tape. She hands me my locker key and I'm glad it has my locker number written on it as I have no clue which one I had chosen. I retrieve my shoes and clothes and get changed. I'm still kind of groggy and looking in the mirror, I regret not having brought a brush. Oh well. At least I brought deodorant. They told me no make up, lotions, or perfume so I always bring some to spruce up for the neurologist appointment.
Back in the car I realize I have an hour and a half before I see the doctor. Shane couldn't come today so we could have lunch and I didn't want to eat out alone. So I get my snacks out and finish the newspaper and solve some word puzzles. I'm too smart and it doesn't take long to solve so I drive over to Trader Joe's and contemplate going in to get a little something to round out my lunch. Like caramel corn. There is an espresso stand across the street and I think that would go well with a treat. In the end I decide to drive up to hospital and wait in my warm cozy car, listening to music. It is made cozier by the downpour that is just starting. I guess a hairbrush wouldn't have made much of a difference. So I opt for some lipstick instead.
I brace for the rain and run to the building. On the entrance a sign announces "Tully's Coming Soon". I'm so glad. Ever since they moved to the new building I always lament the lack of a coffee shop. I can schedule that into my plans for the next appointment.
The nurse comes and has me do the usual walking test, which I always pass with flying colors. I think about asking her if I can skip, just to make it more challenging. With my luck I'd probably trip and do a face plant and the rug is kind of rough and would probably leave mark, so I don't ask.
She weighs me. I'm happy with the numbers. Then she subtracts three pounds for my jeans and sweatshirt. I say I liked the first number better. She laughs and writes down the second one. She takes me into the room and takes my vitals. Everything is good. We chat a little. She adjusts the window shades to let more light in.Then she says the doctor will be in shortly and goes out the star trekish sliding doors. I wish they could put something on them so they would sound high-tech. A nice "swoosh" with a little suction sound at the end. That would be awesome.
I remember I didn't put my earrings back in yet and fish around in my purse for them. They are pretty green and gold ones Shane bought me on his last New York trip. I like that his tastes are more exotic than mine and furnish me with things I would not pick out on my own but really like. I fumble finding the left earring hole. I feel a little rushed and panicky, like I don't want the doctor to think I dressed up or anything and that I always just look nice and put together. So what if I have holes in my brain. I just like to take care of what I do have. While I have it.
I get the earring in and sit back to wait. There is nothing to read so I enjoy the view out the window. It's so pretty with all the green trees. Then the sun starts to peek out adding some gold to the landscape. Hmm. Kind of like my earrings.
In the morning I'm excited to drop off the kids with Grandma and head on down for some "me" time. Me time being me, by myself, lying down. I can't get up even if I want to. Which I don't. I like getting MRIs.
I fill out the paperwork, then pick a chair by the fire and settle down to read the paper.
They call me soon and give me a dressing gown, only it's pants and a top. And only like 10x my size. Luckily it has a drawstring so I cinch it as much as I can then wrap the cord around several times and am good to go. Next they put an IV port in. I liked the way they did it before. Just come in and give me a shot half way through. But I guess they found the scans were more stable or something if they didn't have to move the person and could just press a button to inject the contrast agent.
Last time the guy putting it in didn't get something quite right and when he tested it blood went squirting all over the floor. This one goes just fine, with only a small bruise leftover this morning.
So then we go to get set up in the machine. I lay down on the sliding bed and the assistant coveres me with a heated blanket. I instantly feel realaxed and cozy and am looking forward to some"quiet time".The technician informes me that they are no longer able to use the music playing headphones, just some small ones for ear protection.
"That's ok. I usually don't have music with mine anyway."
"So you won't be able to talk to me then?" I ask hopefully. It was always kind of jarring when you are just starting to relax and then "OK This one's going to run about three minutes." Or six minutes. It kind of interrupts the 25 min of meditation I try and get.
"Oh, no. I'll be able to hear you ,and let you know what's happening."
"Actually, I don't need any updates or anything."
"You have kids?" he asks.
"Yep. Four."
"I figured. Usually the people with kids just want quiet."
"Ok" he says, placing the squeezy alarm/eject thingy in my hand and adjusting the IV bag. "I'll get out of your hair and we'll get this done."
I lay back and he straps the head cage across my face.
"You're not claustraphobic?" he asks.
"Nope." I close my eyes." I'm good."
He leaves and I feel the table slide into the big magnetic tube. Its dark and cozy and I could see how someone might get freaked being in there. But I'm glad I like it.
A few seconds go by and I hear the whirr of the machine with the familiar tweets and knocks. These first ones make me think of little StarWars ships firing at the Death Star in short little bursts. Pew, Pew, take that Vader.Then along comes the deeper laser beam in long steady pulses. The big ships are coming.
The beeps give way to a series of knocks. Usually a knock in the middle of the night heralds a wet bed or sick child. Something that requires my immediate action and gets my adrenaline going. But this time I know I don't have to rush to the door and am able to stay calm. And relaxed. I think about how nice it is that they give me warm blankets. I time my breathing to the rythm of the machine. Then I add a prayer.
Lord Jesus Christ (Knock) Son of God(knock) Have mercy on me (knock) a sinner (knock).
The knocking speeds up and my respiration matches it.
There is a pause. I hold my breath, waiting for my cue. Instead, I feel a cool sensation in my left arm where the needle is. It radiates up my arm and I know they just injected the gadolinium and we are doing the second part of the scan. I'm glad they did not get to interrupt and tell me "Ok, you're going to feel a little coldness in your arm now."
The knocking starts again and I settle down to enjoy the little bit left. I'm thinking fresh warm blanket would be just nice right about now. I wonder if they would bring me one if I asked. But too soon, the door opens and they are sliding me out and unlocking my head. They remove the IV and wrap it tighly with a cotton ball and stretchy tape. She hands me my locker key and I'm glad it has my locker number written on it as I have no clue which one I had chosen. I retrieve my shoes and clothes and get changed. I'm still kind of groggy and looking in the mirror, I regret not having brought a brush. Oh well. At least I brought deodorant. They told me no make up, lotions, or perfume so I always bring some to spruce up for the neurologist appointment.
Back in the car I realize I have an hour and a half before I see the doctor. Shane couldn't come today so we could have lunch and I didn't want to eat out alone. So I get my snacks out and finish the newspaper and solve some word puzzles. I'm too smart and it doesn't take long to solve so I drive over to Trader Joe's and contemplate going in to get a little something to round out my lunch. Like caramel corn. There is an espresso stand across the street and I think that would go well with a treat. In the end I decide to drive up to hospital and wait in my warm cozy car, listening to music. It is made cozier by the downpour that is just starting. I guess a hairbrush wouldn't have made much of a difference. So I opt for some lipstick instead.
I brace for the rain and run to the building. On the entrance a sign announces "Tully's Coming Soon". I'm so glad. Ever since they moved to the new building I always lament the lack of a coffee shop. I can schedule that into my plans for the next appointment.
The nurse comes and has me do the usual walking test, which I always pass with flying colors. I think about asking her if I can skip, just to make it more challenging. With my luck I'd probably trip and do a face plant and the rug is kind of rough and would probably leave mark, so I don't ask.
She weighs me. I'm happy with the numbers. Then she subtracts three pounds for my jeans and sweatshirt. I say I liked the first number better. She laughs and writes down the second one. She takes me into the room and takes my vitals. Everything is good. We chat a little. She adjusts the window shades to let more light in.Then she says the doctor will be in shortly and goes out the star trekish sliding doors. I wish they could put something on them so they would sound high-tech. A nice "swoosh" with a little suction sound at the end. That would be awesome.
I remember I didn't put my earrings back in yet and fish around in my purse for them. They are pretty green and gold ones Shane bought me on his last New York trip. I like that his tastes are more exotic than mine and furnish me with things I would not pick out on my own but really like. I fumble finding the left earring hole. I feel a little rushed and panicky, like I don't want the doctor to think I dressed up or anything and that I always just look nice and put together. So what if I have holes in my brain. I just like to take care of what I do have. While I have it.
I get the earring in and sit back to wait. There is nothing to read so I enjoy the view out the window. It's so pretty with all the green trees. Then the sun starts to peek out adding some gold to the landscape. Hmm. Kind of like my earrings.
Thursday, April 22, 2010
Girls and Boys
Today Audrey asked if she could have a peice of fabric from the sewing chest. I said sure. It was funny that it a few yards of rayon I had bought when I was 16 to make a skirt. I never did. But I liked what she came down stairs with an hour later.
A skirt and top for herself.
And matching ones for Kateri. The back seam had a little wardrobe malfunction going on, so made Kateri put on pants instead. I thought both oufits were pretty cute. I might just get out the machine and let Audrey use that. She did these by hand.
A few minutes later Kateri lost her loose tooth.
Yesterday we went to my sister's for a sister get together and birthday party. They are re-doing the front lawn and had torn up all the grass. And, being Seattle, there had been plenty of rain, so the yard was one big mud pit. Which the boys loved.
They had fun slogging around in the thick goo. And then decided it would be really fun to ride bikes in it.
Some areas worked.
And some didn't.
But a great time was had by all. The boys with mud. The girls inside with the other eight children. And coffee. And brownies.
I'm looking forward to more get togethers when the weather is nice.
Tuesday, April 20, 2010
The Good and The Bad
So the good news is, people at art class are starting to get rid of last year's books. And then some.
The bad news is I need more book shelves. (Or is that good news?)
The good news is I now have a matched set of candle sticks. The bad news is, I have one less wine goblet. I hope this does not portend anyone's untimely demise. But if so, we're ready for a vigil.
I could take a picture of my laundry room. Then I could title this post the good, the bad, and the ugly. But no one wants to see that and I'm too tired to go upstairs and snap a photo. So I'll call it the good, the bad, and the kind of tired and really ready for summer vacation. But that is kind of long.
Sunday, March 28, 2010
Turn Your Head And Swallow
I had my annual neurologist visit this week. I totally kept my composure. I'm not sure if not having Shane there helped, or made it even more amazing that I did just fine. Anyway it was a very good visit and Dr.M was super understanding when I told him I didn't want to do the shots anymore. The last one left me with an itchy rash and I was running out of areas that are not full of scar tissue. He said someone with my frame would have trouble finding enough real estate and maybe I'd want to to try an intra-muscular one instead. Not really sure why he thought I'd have an easier time with that, although the once a week did sound good.
He said he'd basically work with me and find something I would be able to do, as long as it was something. He also said I could take the rest of the week off, which I had already started doing anyway. Then he brought up some other options- Tsyabri, a once a month infusion, but a few people on it have died of a brain infection. So maybe not that one. Or the Avonex once weekly in the muscle, not too sure of that, the needles are like two inches long and would probably go right through my arm. Finally, he brought up a new study being done using one of three doses of fingolimod or a placebo. With three doses, I'd have a 75% chance of being on it. The great thing about it is that it is a pill. I was kind of - actually very- interested. And as it was the second study, so they already know all the possible side effects and monitor you very closely.
He gave me an information packet on it and I was excited to get home and research it. Unfortunately, although it is extremely effective, is has some moderate-extreme side effects. You have to be seen pretty often so they can check for melinoma- which so far is usually benign. Upper respritory infections are very common. And as it sequesters your white blood cells in your lymph nodes, you have to be careful about being around sick people. Especially chicken pox. I guess a couple people died, and somehow it involved chicken pox. I had chicken pox so I think I'd be ok.
But reading over the criteria for being accepted into the study I found that they insist you are post-menopausal or you've been neutered or are on the pill. All of which rule me out.
It sounded so attractive at first. 3 months no drugs- to cleanse the system. Then 6 months of pills. And maybe some extra if they extend the study and you want to take the drug for certain. And you haven't died of herpes.
Knowing I can't take it makes me feel better about not worrying about lots of side effects. Just my liver doesn't seem so bad- which is doing well by the way. And it was fun to dream for a day or two- I'm a slow reader and there were lots of papers.
So in the end we worked out how I could "stick" with what I'm already on and I guess I'm feeling better about that now. Maybe it was good for me to hear the other options and make me feel like what I've got isn't so bad. I put some cortisone on the itchy spot and I think it may be helping.
I did mention to him a funny feeling I've been getting when I swallow for the past few months and he thought it might be worth while to get a swallow evaluation. So when I got home I scheduled one for later in the week. I figured why not? I'm not choking or anything but it wouldn't hurt. Secretly I hoped they would find my thyroid was not quite right and could give me a pill and my hair would stop falling out. And I'd get a new pair of shoes just for being a good patient.
Well, I did get some applesauce, and yummy diced peaches , and graham crackers. And a skittle that I had to just swallow like a pill so it didn't even matter if I picked the lemon one. Oh, and my thyroid was not the issue. Rats! It seems to be the muscles the right side of my throat.
But she did have some fascinating information for me and I found the diagnostic process interesting too. she gave me a range ot things to eat or drink, with varrying textures and viscosities. After watching me ingest, and feeling my thryoid and all that she had me look out the window while I ate applesause. It felt normal. I looked to my left, still felt strange. I looked down, very odd way to swallow. Still felt strange. She explained it like this: the muscles on the right side are being sluggish. When I turn my head to the right, it pulls and forces the left side to do the work. I thougth it was really cool and was experimenting all through dinner that night. But Shane knew what I was doing so he didn't think I was too weird.
She also explained that both ends of the eating spectrum are problematic. The crackers, popcorn, etc because of their dry and rough texture. And water, because it slips down too quickly. She said it is because it is tasteless, textureless, and especially if it is room temperature, it sends no signals to the brain to prep it for swallowing. I was really excited. It explained why I could down an entire Snapple Lemon Iced Tea without stopping but felt like I was being drowned if I tried to guzzle 6 oz of water. -It also explained why they put thickeners in everything my mom drank after her stroke. She was so disappointed when she took the lid off her coffee only to find it syrupy. (we snuck down to Starbucks and brought her back some real stuff. She had already had the swallow evaluation and had passed, so it seemed silly to us to make her drink gross coffee, not to mention mean).
So, although it was not the best news, it was educational, and tasty. And now that I know why it feels funny, I'd like to know if the Doctor thinks there is new activity and the Rebif is not working so I can just stop it all together. But after reading these articles, I am inclined to think they might be on the wrong track intirely and why risk more bumps and bruises and possibly liver health , for something that is not adressing the root cause, which it seems they are not entirely sure of. I wish I had read the articles before my appointment. Dr. M is very nice and doesn't act like he thinks I'm crazy when I preface things with "So, I was reading on the internet..." I'd like to think its because I bring up valid and pertinent information that warrants a serious considering. And not just that he is so nice.
He once told me "It's a really exciting time to have MS!" I can't say I shared his sentiment completely in the same way. I did like the fact that he was so passionate about his area of expertise. It does seem like a lot of new puzzle pieces are being discovered lately. And I do like puzzles. I wouldn't mind some new shoes too.
He said he'd basically work with me and find something I would be able to do, as long as it was something. He also said I could take the rest of the week off, which I had already started doing anyway. Then he brought up some other options- Tsyabri, a once a month infusion, but a few people on it have died of a brain infection. So maybe not that one. Or the Avonex once weekly in the muscle, not too sure of that, the needles are like two inches long and would probably go right through my arm. Finally, he brought up a new study being done using one of three doses of fingolimod or a placebo. With three doses, I'd have a 75% chance of being on it. The great thing about it is that it is a pill. I was kind of - actually very- interested. And as it was the second study, so they already know all the possible side effects and monitor you very closely.
He gave me an information packet on it and I was excited to get home and research it. Unfortunately, although it is extremely effective, is has some moderate-extreme side effects. You have to be seen pretty often so they can check for melinoma- which so far is usually benign. Upper respritory infections are very common. And as it sequesters your white blood cells in your lymph nodes, you have to be careful about being around sick people. Especially chicken pox. I guess a couple people died, and somehow it involved chicken pox. I had chicken pox so I think I'd be ok.
But reading over the criteria for being accepted into the study I found that they insist you are post-menopausal or you've been neutered or are on the pill. All of which rule me out.
It sounded so attractive at first. 3 months no drugs- to cleanse the system. Then 6 months of pills. And maybe some extra if they extend the study and you want to take the drug for certain. And you haven't died of herpes.
Knowing I can't take it makes me feel better about not worrying about lots of side effects. Just my liver doesn't seem so bad- which is doing well by the way. And it was fun to dream for a day or two- I'm a slow reader and there were lots of papers.
So in the end we worked out how I could "stick" with what I'm already on and I guess I'm feeling better about that now. Maybe it was good for me to hear the other options and make me feel like what I've got isn't so bad. I put some cortisone on the itchy spot and I think it may be helping.
I did mention to him a funny feeling I've been getting when I swallow for the past few months and he thought it might be worth while to get a swallow evaluation. So when I got home I scheduled one for later in the week. I figured why not? I'm not choking or anything but it wouldn't hurt. Secretly I hoped they would find my thyroid was not quite right and could give me a pill and my hair would stop falling out. And I'd get a new pair of shoes just for being a good patient.
Well, I did get some applesauce, and yummy diced peaches , and graham crackers. And a skittle that I had to just swallow like a pill so it didn't even matter if I picked the lemon one. Oh, and my thyroid was not the issue. Rats! It seems to be the muscles the right side of my throat.
But she did have some fascinating information for me and I found the diagnostic process interesting too. she gave me a range ot things to eat or drink, with varrying textures and viscosities. After watching me ingest, and feeling my thryoid and all that she had me look out the window while I ate applesause. It felt normal. I looked to my left, still felt strange. I looked down, very odd way to swallow. Still felt strange. She explained it like this: the muscles on the right side are being sluggish. When I turn my head to the right, it pulls and forces the left side to do the work. I thougth it was really cool and was experimenting all through dinner that night. But Shane knew what I was doing so he didn't think I was too weird.
She also explained that both ends of the eating spectrum are problematic. The crackers, popcorn, etc because of their dry and rough texture. And water, because it slips down too quickly. She said it is because it is tasteless, textureless, and especially if it is room temperature, it sends no signals to the brain to prep it for swallowing. I was really excited. It explained why I could down an entire Snapple Lemon Iced Tea without stopping but felt like I was being drowned if I tried to guzzle 6 oz of water. -It also explained why they put thickeners in everything my mom drank after her stroke. She was so disappointed when she took the lid off her coffee only to find it syrupy. (we snuck down to Starbucks and brought her back some real stuff. She had already had the swallow evaluation and had passed, so it seemed silly to us to make her drink gross coffee, not to mention mean).
So, although it was not the best news, it was educational, and tasty. And now that I know why it feels funny, I'd like to know if the Doctor thinks there is new activity and the Rebif is not working so I can just stop it all together. But after reading these articles, I am inclined to think they might be on the wrong track intirely and why risk more bumps and bruises and possibly liver health , for something that is not adressing the root cause, which it seems they are not entirely sure of. I wish I had read the articles before my appointment. Dr. M is very nice and doesn't act like he thinks I'm crazy when I preface things with "So, I was reading on the internet..." I'd like to think its because I bring up valid and pertinent information that warrants a serious considering. And not just that he is so nice.
He once told me "It's a really exciting time to have MS!" I can't say I shared his sentiment completely in the same way. I did like the fact that he was so passionate about his area of expertise. It does seem like a lot of new puzzle pieces are being discovered lately. And I do like puzzles. I wouldn't mind some new shoes too.
Friday, March 19, 2010
The Morning After
We went to a Napa wine dinner last night, and I am still on cloud 9 this morning. Unlike a hangover, I'm enjoying the long and lingering finish, and I remember and savor every detail of the evening. Our signifigant others were able to accompany us this time, made possible by Courtney and Tim, who were able to keep up with Pippin on Halo ODST ( which I can't help but think of 'odius STD' when I say). The kids had a great time and we had a fabulous time and came home with some new wines to try. It is so much fun to talk with someone who is so passionate about food and wine, and it was really nice Shane was there because I would not have spent that much. But I will enjoy drinking them.
Apparently, we didn't get enough because when we got home we both wanted to try one right away. We picked the Owen Roe 'Rosa Mystica' ($46.99) , a 2007 cabernet franc. It was very nice, like liquid cocoa powder. We had it with pita chips, but I'm looking forward to trying it with food tonigth. I was going to do some halibut, but now I might do salmon instead. Or maybe the spicy shrimp we had last night.
We also had hanger steak with watercress sauce and onion jam. We'll be making that for Shane's birthday dinner, along with the apple pie with white cheddar crust. And the fennel spiced prawns with citrus salad. And one of the new wines.
I realized I didn't get all the courses, or any pictures of our group. But the wonderful food, wine, and company were a little distracting. And since we usually end up re-creating the meals at home, there are more opportuniteis for pictures.
Since its lent, and Friday, I'll just put the recipe for the prawns up. And because the kids are waiting to go ride bikes so I need to hurry.
Fennel spiced Prawns with Citrus Salad
1T Fennel spice
1 blood orange
1/2 grapefruit
1 navel orange
salt and pepper
1/4 cup extra-virgin olive oil
1 large bunch watercress - we actually used spinach last night and that was good too
Fennel Spice
1 c fennel seeds
3T coriander seeds
2 T white peppercorns
3 T kosher salt
Toast the seeds and peppercorns over med heat until lightly brown and fragrant. Let cool completely. Then blend in blender with salt until you get a fine powder.
Sprinkle 1 T over shrimp and refrigerate, covered, up to six hours.
Cut the skin and pith off all the fruits. With a kinfe, segment the fruit, leaving out the membranes. Slice them over a bowl to catch any juices. Add 1/4 cup oilve oil, salt, and pepper. Toss to mix.
Preheat oven to 400. Heat 2 T oil in skillet and cook prawns about 2 min until they begin to turn pink around the edges. Place pan in oven and cook 2 min longer.
To serve, place 1/4 watercress on each plate. Toss the citrus mixture and spoon over watercress, making sure to sprinkle the juices. Arrange prawns around each salad.
Update: We made this for Shane's birthday. I just sauteed the shrimp on the stove for 4-5 min and skipped the oven part. Also, we thougth we'd improve it by cutting the citrus in smaller pieces- they had serve them in segments- but the grapefruit really fell apart and it was better to leave them bigger.
Thursday, March 18, 2010
Audrey's Got Her Blog Back
After forgetting her password and many failed attempts to get it changed, we finally got it done and Audrey is back in the blogging word. Which means we, at home, won't be seeing her much. She loves to write, which is great. Its pretty good stuff and I might just have to retire my blog. I think I'll have her post some of her writing assignments as well. Take a look. She has our latest pet news also.
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