I talked with the nurse from Seattle today and she told me the neurologist thinks I qualify and wants me to come up to be screened. Yay! She called me last night and wanted to confirm that I am in the 3.0-5.5 EDSS range, so after I talked to her, Ben measured the distance from the kitchen to the living room walls (30 feet), and had me walk 11 lengths which is 100 meters, and I could do it! Even navigating the turns. So I emailed Bernie back and told her I defiitely can walk 100 m without my cane, and today she called to tell me the neurologist approved me. She's supposed to call tomorrow to let me know when he has an availability to have me come up and be screened. Probably the 2nd or 3rd week in January.
She also said again that once M.D. Anderson is ready to recruit patients (or Baylor), I can be transferred back here. I hope they can get things started down here quickly so I can spend 3 months in Houston rather than in Seattle. So as long as I can keep at this level for the next 3-4 weeks, I should be ok.
I had a neuro appointment today and we talked about maybe doing monthly 1-day Solumedrol pulses if I start noticing a decline, so that's always a possibility. I just got done with the prednisone on Tuesday, though, and I'm not in any hurry to get back on more steroids, so I'm not going to do it unless I start noticing more trouble walking. My physical therapist says I'm doing really well and wants me to continue, so I'll probably get another 3 weeks of PT which should help as well.
In other news, something I've been dreading finally happened. I don't know how I managed to go nearly 6 1/2 years before dealing with this, so I should be grateful. Yesterday afternoon Brigham took a pair of scissors to his hair. Not a big deal, I had actually just cut his hair so it was pretty short anyway, but there are definitely two noticable bald-ish spots on his head. I think Brigham was surprised I noticed. He was very contrite and told me he wouldn't do it again. He is such a sweet boy, I hate getting after him about anything.
Today we desperately needed to do a massive toy cleanup, and Mosey and Joseph were both "too tired" to help. So they both had to go lay in their beds, and Brigham helped me pick up all the toys. And last night as he was going up to bed, he came up to me and kissed me on the cheek and said, "Thank you for making my fish blanket, mom." (I made each boy a blanket for Christmas). Isn't he sweet? I feel bad heaping praise on Brigham and not heaping equal praise on his brothers, but I gotta be honest, at the moment, Brigham definitely has the corner on sweetness.
AND, we are finally the proud owners of just ONE house!! Yahoo!! One year to the day (isn't that weird?) that we listed our Florida house, it finally closed. Ben has spared me the gory details of the final negotiations over the past few weeks, but did assure me that we got out of the house without actually having to write a check to the bank, so that's a good thing. We just won't think about the tens of thousands of dollars swallowed up this past year paying mortgage on an empty house... If only we had known a year ago what we know now! But you know, as unfortunate as all of that has been, the other stuff going on in our lives has helped to give us a little perspective. Money is just money. There's a lot of other stuff that can happen in life that is a lot more important that making or losing money. A year ago if I had known how things would end up with that house, I probably would have been pretty devastated. But this year? I don't really care. I'm just glad not to have that debt hanging over our heads anymore. Ben and I had really been struggling with knowing what we should do. Should we keep trying to sell the house? Should we rent it out and wait till the market improved? When our bishop gave us the blessing that our house would sell soon, that really answered that question. So it was just a matter of what we needed to do to insure that the house would sell "soon." I think I had been ready to make that plunge for a few months, but Ben wasn't quite there yet. But once he made that decision and called our realtor to lower the price it was pretty amazing how quickly we got an interested buyer!! Today the loans actually cleared from our account, so it is officially OVER. Phew!!!
Ok, now I better get some real food for my boys. I think they've eaten nothing but ice cream cones and Christmas treats this whole day. Disgraceful!
Thursday, December 27, 2007
Tuesday, December 25, 2007
The Big Christmas Surprises
Christmas, "Chrissy," our new 4 month old kitten.
"Friendly," our new Russian tortoise.
Saturday, December 22, 2007
Milestones
Ok, so there have been a few important milestones our family has reached recently.
1. Mosey has reached the "potty talk" stage. Yes, I remember this well from when the twins were about his age. His favorite phrases are: "Yuckyhead" and "Poopy on the potty," both of which must be yelled very loudly with an extremely silly look on his face. Brigham and Joseph unfortunately are not entirely anxious to discourage Mosey from indulging in said potty talk.
2. Brigham and Joseph have learned the perennial school-yard version of jingle bells, which goes, "Jingle bells, Batman smells, Robin laid an egg," etc., etc. They are both thoroughly delighted with this song and sing it... frequently. This must be some sort of rite-of-passage for elementarly school students. I wonder when this particular song was first invented? I remember learning it at school at probably the same age Brigham and Joseph are now.
3. Brigham has learned to ride a two-wheeler without training wheels! Wow! He was determined today that he was going to learn, and by golly, he did! He started out with both training wheels for a while, then Ben took off one of the training wheels, and after an hour or so, took off the other one, and away he went! Ben was on his roller blades and for the first few lengths of the church parking lot, he kept his hand on Brigham's bike, only letting go when he could feel Brigham was balanced. But after a few minutes, Brigham really was doing it entirely on his own. He did have a few spills (thank goodness for helmets and knee and elbow pads), and his technique needs a little refining (his current braking technique is to go full-speed until he hits a curb, a patch of grass, the side of a car...), but all-in-all, I was very impressed. Joseph got the one-training wheel thing all right but hasn't quite plucked up the courage to go without them entirely yet. But peer pressure is a powerful thing, and I'm sure it won't be long.
4. My boys are *starting* to exercise some measure of impulse control. Thursday after school I was in my bedroom and listening to the boys come up with a hare-brained idea of getting a can of pop, and then "exploding" it with a hammer. They went in the garage and got the pop and the hammer, and I was on my way out to ask them what in the world they were doing, when Brigham came in and said, "Mom, we want to go outside and explode a can of pop with a hammer, because we really like it when pop explodes." Well, with such a nice way of asking permission, I granted it. It was diet 7-up, about as messy as water, and if it was in the back yard, well, ok. I told him thank you for asking me, and just be very careful with the hammer.
So, that's cool, huh?
1. Mosey has reached the "potty talk" stage. Yes, I remember this well from when the twins were about his age. His favorite phrases are: "Yuckyhead" and "Poopy on the potty," both of which must be yelled very loudly with an extremely silly look on his face. Brigham and Joseph unfortunately are not entirely anxious to discourage Mosey from indulging in said potty talk.
2. Brigham and Joseph have learned the perennial school-yard version of jingle bells, which goes, "Jingle bells, Batman smells, Robin laid an egg," etc., etc. They are both thoroughly delighted with this song and sing it... frequently. This must be some sort of rite-of-passage for elementarly school students. I wonder when this particular song was first invented? I remember learning it at school at probably the same age Brigham and Joseph are now.
3. Brigham has learned to ride a two-wheeler without training wheels! Wow! He was determined today that he was going to learn, and by golly, he did! He started out with both training wheels for a while, then Ben took off one of the training wheels, and after an hour or so, took off the other one, and away he went! Ben was on his roller blades and for the first few lengths of the church parking lot, he kept his hand on Brigham's bike, only letting go when he could feel Brigham was balanced. But after a few minutes, Brigham really was doing it entirely on his own. He did have a few spills (thank goodness for helmets and knee and elbow pads), and his technique needs a little refining (his current braking technique is to go full-speed until he hits a curb, a patch of grass, the side of a car...), but all-in-all, I was very impressed. Joseph got the one-training wheel thing all right but hasn't quite plucked up the courage to go without them entirely yet. But peer pressure is a powerful thing, and I'm sure it won't be long.
4. My boys are *starting* to exercise some measure of impulse control. Thursday after school I was in my bedroom and listening to the boys come up with a hare-brained idea of getting a can of pop, and then "exploding" it with a hammer. They went in the garage and got the pop and the hammer, and I was on my way out to ask them what in the world they were doing, when Brigham came in and said, "Mom, we want to go outside and explode a can of pop with a hammer, because we really like it when pop explodes." Well, with such a nice way of asking permission, I granted it. It was diet 7-up, about as messy as water, and if it was in the back yard, well, ok. I told him thank you for asking me, and just be very careful with the hammer.
So, that's cool, huh?
Friday, December 21, 2007
Marshmallow Day
Joseph marshmallow painting.
Brigham concentrating hard on his marshmallow bingo.
One of Mosey's many, many perler bead creations. Cool, huh?
Well, here it is Friday and no word back from Seattle. I hope today. I sent a short email to the nurse-coordinator, asking if she thought I might hear back today, or if I should just be patient until after Christmas. I don't want to be pushy. There is a fine line between being your own best advocate when it comes to the medical system, and being an annoying, pushy patient, which is totally counterproductive. You get *less* of what you want when you cross over that line. But I do want them to know that I want to know, so if the Neuro has already decided on me, and they just haven't had a chance to call me yet, they should call! I don't want to wait until after Christmas.The boys are officially on Christmas vacation! Of course, they were up at the same time they always are on school days, so no sleeping in for me... I let them stay up late last night so I'll probably pay for it later on with grumpy kids. I'll get them down early tonight. Last night we drove around a few of the streets around our house looking at the Christmas lights. There are some houses that really go all out! The boys really enjoyed it. On one front lawn there was a blow-up Santa on an airplane. Brigham looked at that and then a couple minutes later as we were driving down the street, he said, "Well, there could be a Santa because he only brings presents to kids that celebratae Christmas. And if he was in an airplane, he would probably have time to bring presents to everyone." I told him that was a very good thought-- a majority of children in the world don't celebrate Christmas, so he certainly wouldn't have to go to every house. And an airplane is much faster than reindeer! So Joseph and Brigham talk about this for a little while, and Joseph (who is my ultimate skeptic), finally asked Brigham, "So, do you believe in Santa Claus or not?" And Brigham replied, "I just don't know! I just don't know if I believe in Santa or not!" Awwww... Joseph asked me earilier if I know of any grownups who believe in Santa, and I told him that I don't really ask most grownups that question, but that I am sure there are probably lots of adults who do believe. (Heck, there are lots of slightly disturbed adults who think they *are* Santa!). Brigham has asked me if I believe in Santa, and I just told him that I know of stories of amazing things that happen at Christmas that really can't be explained. And left it at that. So I'm not lying to him, but I'm certainly NOT going to squash any little hope he has that Santa is real. On Wednesday the boys had their "winter party." Ok, so I'm sure their school isn't the *most* politically correct elementary school in the country, but it's got to be above average!! Their winter party took the form of "marshmallow day." The whole day they had fun activities relating to marshmallows. All the kids were supposed to wear white (or as much white as possible-- the boys dressed in their TKD uniforms), they made s'mores, drank hot chocolate with marshmallows, watched a video about how marshmallows are made, played marshmallow bingo, painted pictures using marshmallows as paint brushes, and at the end of the day, the whole first grade had a big marshmallow fight out on the field. It was very cute, and all the kids loved it (Joseph had been asking me for days when it was going to be Marshmallow Day, the teachers made a big deal about it). I went to the school and spent about 20 minutes in each of the boys' classrooms, and the kids were definitely having fun. But c'mon. Marshmallow day? I mean, they didn't even call it a winter festival, or a holiday party, or anything. It was as far removed from the holidays as you could possible get! Last year in Florida (which you would think would be a whole lot more PC than Texas, right?), they had a holiday party, and it was really cute. Of course nothing religious, but they decorated Santas and made "reindeer treat bags," and ate candy canes, and made construction paper menorahs. At least they were acknowledging the existence of religious holidays in December, acknowledging the whole reason we *have* a "winter break!" I had been a little encouraged about the school's approach to the holidays, because there was pine garland with red bows strung up around the kids waiting area in front of the school, and there was a Christmas tree inside the front door. Which the boys reported had a Santa hat on top. But things are not entirely how they appeared. I went to the school on Wednesday with Sister Kelley (bishop's wife), who is more "in the know" about things in the school, and she told me that it is parent volunteers who are in charge of decorating the school for various holidays/seasons, and therefore one of the parents who did the garland and the Christmas tree. And the school has been getting call after call from angry parents who think the pine garland with red bow is too overtly religious (?????), and furious calls about the Christmas tree. Immediately the school put up a display right next to the tree with a menorah and this Ramadan candle thingy and a Kwaanza display. I do have to give the school credit (marshmallow day notwithstanding), because there are are lots of other schools who would simply immediately take down the offending decorations with the first angry call, and they have not done so. But still, I'm just amazed that there are parents who are seriously offended at a pine garland!!! My, how things have changed from when I was in first grade. Ok, that's it for this morning. I'll send an email out whenever I hear anything from Seattle.
Sunday, December 16, 2007
Shopping nearly done!
Hello Everyone,
This has been a pretty good few days. Yesterday some people from our ward (the Bruderers) came over and installed hand rails around our bathtub. They did SUCH a good job, and it is something Ben and I surely could not have done ourselves. He's going to come and put another railing up the stairs, too, but he wanted to match the stain, first. I just can't believe all the things our ward has done for us.
And we've had a little "pixie" leaving us 12 days of Christmas treats. Tonight we got "4 calling birds," which were 4 toy cell phones. So cute! The boys have had fun seeing what comes each night.
Last night Ben and I got a babysitter (first time we've gone out by ourselves in... about 9 months I think??), and went Christmas shopping. I had done a good part of it during the week, but we needed to go out together to look at a few things. I am VERY excited about Christmas morning around here. I think our kids will be very happy. But I'm not telling what we're getting, you'll have to wait till Christmas!
The boys have been pretty funny about what they want for Christmas. Friday Joseph told me he wants a puppy and a computer and a phone (um, yeah, I'm really buying my 6-year-old a cell phone!). Brigham wants a kitten (of course, he's been asking for that one for 6 months now), and a race car track. And Mosey? When I have asked him what he wants, he just says, "A glow-in-the-dark thing." So, does anyone know where the "glow-in-the-dark-thing" aisle is at Walmart? I couldn't find it!
As most of you know, we don't do Santa Claus at our house. Not really my choice, but that's how it has ended up. A combination of a husband who doesn't think it is a good idea to baldly lie to our children (I know, I know, bizarre, isn't it :-) ?) and very curious, very literal, very persistent children. But Brigham still *wants* to believe, I can tell. He has been writing stories about Santa and his elves, and we have this Santa advent calendar with little drawers with ornaments that you take out each day. Tonight he went up to the Santa, kissed him, and said, "Thank you Santa for bringing us presents!" Awwww, sweet, isn't he? I do still wish we did Santa at our house, there is such a short time in a child's life when they can believe in magic.
There is a good side to not doing Santa, though. Joseph wrote and illustrated a story this last week called "The Christmas Tree." It reads: "Once upon a time there was a pine tree. It got cut down. Then there was a very important birthday in Bethlehem. They brought the pine tree to Bethlehem and they put on ornaments and a star on top of it. Then they made up the celebration called Christmas and they celebrated it every 25th of December. The End." So, obviously at least Joseph is cognizant of the fact that Christmas is about Jesus's birthday. Although even with that, his literalist streak comes out. He likes to tell us, frequently, that Jesus wasn't actually born on Christmas day, but that he was really born on April 6. So I asked him if maybe he'd rather wait until April 6 to open his Christmas presents, but NO, he is still willing to celebrate Christmas in December. LOL!
Today at Church Mosey had a break-through with his drawing skills. As smart a boy as he is verbally, and with reading and math, his representational skills have always been a bit... lacking. I get a chuckle out of seeing his artwork from preschool up on the wall alongside of the other 3-year-olds' artwork. He has enjoyed the "scribbling" stage of artwork very much, and has had no desire to move on to actual representational drawing. But today at Church, he drew a picture of the TV room upstairs, complete with TV, carpet, bookshelves, and people watching the TV. Granted, I'd have no idea that is what the picture was without him translating it for me, but once he pointed out the elements, I could actually sort of see what he was drawing! Wow! I was thinking to myself that I'd have to be sure to save this picture for his scrapbook, when the scribbling urge came over him again and now it is a picture of the TV room pretty much completely obscured by scribbling... Oh well, at least I can record for posterity (since I know his posterity will be totally fascinated by this particular bit of trivia) that on December 16, 2007, Moses Turner made his first representational drawing.
Speaking of drawing, I'm a little frustrated. I've been working with this woman on a drawing she wanted done of her son, to give to her husband. She sent me a photo and told me she wanted pretty much exactly what was in the photo. So I've been working on it the past few weeks, wanting to get it done and sent off before Christmas. I finally finished this weekend, and sent her a picture of it to get the go-ahead (I hoped) to send it off to her. Well, she decided she wants her husband's hand out of the picture, as well as her daughter's face out of the background, and "even though I know he is all wrapped up in a hoodie," she wants his body "more distinct." But the good thing is, at least I got the face "exactly right!" The problem is, I can't make all those changes without starting completely over again. Sigh... I don't disagree with the changes she wants made, in fact I think her husband's hand is quite distracting, and the hoodie a bit too all-consuming. I do kind of like her daughter's face in the background, though. But then why did she want me to use that particular photo?? Oh well. Every time I do one of these drawings, I tell myself I'm not going to do it again because it always ends up being such a hassle and taking me usually 2-3 times longer than it should. It's a good thing I generally enjoy the process. I did tell her I am not going to be able to work on it until after Christmas.
Ok, that's it for tonight. Here begins my week of nervousness as I await word from the cancer center in Washington on whether they want me to come in to be screened for the study. They have all my records and I should hear back from them mid-to-late this week. Hoop #1. We'll see if I get through it.
This has been a pretty good few days. Yesterday some people from our ward (the Bruderers) came over and installed hand rails around our bathtub. They did SUCH a good job, and it is something Ben and I surely could not have done ourselves. He's going to come and put another railing up the stairs, too, but he wanted to match the stain, first. I just can't believe all the things our ward has done for us.
And we've had a little "pixie" leaving us 12 days of Christmas treats. Tonight we got "4 calling birds," which were 4 toy cell phones. So cute! The boys have had fun seeing what comes each night.
Last night Ben and I got a babysitter (first time we've gone out by ourselves in... about 9 months I think??), and went Christmas shopping. I had done a good part of it during the week, but we needed to go out together to look at a few things. I am VERY excited about Christmas morning around here. I think our kids will be very happy. But I'm not telling what we're getting, you'll have to wait till Christmas!
The boys have been pretty funny about what they want for Christmas. Friday Joseph told me he wants a puppy and a computer and a phone (um, yeah, I'm really buying my 6-year-old a cell phone!). Brigham wants a kitten (of course, he's been asking for that one for 6 months now), and a race car track. And Mosey? When I have asked him what he wants, he just says, "A glow-in-the-dark thing." So, does anyone know where the "glow-in-the-dark-thing" aisle is at Walmart? I couldn't find it!
As most of you know, we don't do Santa Claus at our house. Not really my choice, but that's how it has ended up. A combination of a husband who doesn't think it is a good idea to baldly lie to our children (I know, I know, bizarre, isn't it :-) ?) and very curious, very literal, very persistent children. But Brigham still *wants* to believe, I can tell. He has been writing stories about Santa and his elves, and we have this Santa advent calendar with little drawers with ornaments that you take out each day. Tonight he went up to the Santa, kissed him, and said, "Thank you Santa for bringing us presents!" Awwww, sweet, isn't he? I do still wish we did Santa at our house, there is such a short time in a child's life when they can believe in magic.
There is a good side to not doing Santa, though. Joseph wrote and illustrated a story this last week called "The Christmas Tree." It reads: "Once upon a time there was a pine tree. It got cut down. Then there was a very important birthday in Bethlehem. They brought the pine tree to Bethlehem and they put on ornaments and a star on top of it. Then they made up the celebration called Christmas and they celebrated it every 25th of December. The End." So, obviously at least Joseph is cognizant of the fact that Christmas is about Jesus's birthday. Although even with that, his literalist streak comes out. He likes to tell us, frequently, that Jesus wasn't actually born on Christmas day, but that he was really born on April 6. So I asked him if maybe he'd rather wait until April 6 to open his Christmas presents, but NO, he is still willing to celebrate Christmas in December. LOL!
Today at Church Mosey had a break-through with his drawing skills. As smart a boy as he is verbally, and with reading and math, his representational skills have always been a bit... lacking. I get a chuckle out of seeing his artwork from preschool up on the wall alongside of the other 3-year-olds' artwork. He has enjoyed the "scribbling" stage of artwork very much, and has had no desire to move on to actual representational drawing. But today at Church, he drew a picture of the TV room upstairs, complete with TV, carpet, bookshelves, and people watching the TV. Granted, I'd have no idea that is what the picture was without him translating it for me, but once he pointed out the elements, I could actually sort of see what he was drawing! Wow! I was thinking to myself that I'd have to be sure to save this picture for his scrapbook, when the scribbling urge came over him again and now it is a picture of the TV room pretty much completely obscured by scribbling... Oh well, at least I can record for posterity (since I know his posterity will be totally fascinated by this particular bit of trivia) that on December 16, 2007, Moses Turner made his first representational drawing.
Speaking of drawing, I'm a little frustrated. I've been working with this woman on a drawing she wanted done of her son, to give to her husband. She sent me a photo and told me she wanted pretty much exactly what was in the photo. So I've been working on it the past few weeks, wanting to get it done and sent off before Christmas. I finally finished this weekend, and sent her a picture of it to get the go-ahead (I hoped) to send it off to her. Well, she decided she wants her husband's hand out of the picture, as well as her daughter's face out of the background, and "even though I know he is all wrapped up in a hoodie," she wants his body "more distinct." But the good thing is, at least I got the face "exactly right!" The problem is, I can't make all those changes without starting completely over again. Sigh... I don't disagree with the changes she wants made, in fact I think her husband's hand is quite distracting, and the hoodie a bit too all-consuming. I do kind of like her daughter's face in the background, though. But then why did she want me to use that particular photo?? Oh well. Every time I do one of these drawings, I tell myself I'm not going to do it again because it always ends up being such a hassle and taking me usually 2-3 times longer than it should. It's a good thing I generally enjoy the process. I did tell her I am not going to be able to work on it until after Christmas.
Ok, that's it for tonight. Here begins my week of nervousness as I await word from the cancer center in Washington on whether they want me to come in to be screened for the study. They have all my records and I should hear back from them mid-to-late this week. Hoop #1. We'll see if I get through it.
Wednesday, December 12, 2007
Fffffrrrrreeeeezzzzziiiiinnnnngggg!!!!
Well, I have managed to miss both of the really cold fronts that have come down through Austin, the first when we were in Phoenix, and the second when I was in the hospital, but I didn't miss this one. Yesterday it was near 80 and today it didn't get above 42, and drizzling all day. Yuck! There is a reason I don't do winter!! I hate being cold. I guess it makes it feel more like Christmas time, but mostly I just feel cold. :-)
We had a really nice weekend, before it got cold. Last Friday night we went to eat at a Chinese restaurant that had been recommended to us, and I was not disappointed. It's hard to find a good Chinese place, either they're way too Americanized or just a little iffy in the sanitation department. But this was a very nice place (but not too nice, or we couldn't bring the boys!), and very good food. Afterwards we went to a Christmas tree lot and picked out a tree. I'm not sure what kind of tree it is, but it is the best tree we've ever had! It must have been cut very recently because the needles are all still soft and green, and it is naturally just the perfect cone shape. Ben got it all trimmed and set up in the Christmas tree stand that night while the boys rode their bikes in the driveway.
Saturday morning was our ward's Christmas breakfast. This in lieu of a ward dinner, and I thought it was great. MUCH better for kids to have a breakfast, than to be up too late and tired and grumpy sitting through a program. There were musical numbers, our bishop spoke, and good food. This was my first time showing up at our Church building in more than a month! (Because we had Stake conference, and then we were gone to AZ for two Sundays in a row, and then I was in the hospital). It was nice to see everyone and everyone was really, really nice and came and asked how I was doing and everything.
After the breakfast the boys rode their bikes in the parking lot again. A few months ago I had brought them all up to the Church to practice on their bikes, and they just weren't quite big enough/strong enough/coordinated enough, so it was fun to see how they've grown and improved since then. Then we did a Walmart grocery store run to get a bunch of food ready for the afternoon. At 2:00 three Young Women from my ward came over and helped me make food. I'm going to try a once a month (or maybe once every two week) cooking thing to simplify things around here, and to give my kids something better to eat that frozen pizza, macaroni and cheese, and ramen noodles! LOL! So we made meatballs and chicken paprakash (sp?), and chicken enchiladas, and now my freezer is full. The girls were great, they did most of the work and I sat at the table and directed, and afterward they cleaned everything up! I think they had fun, too. We ate about half the meatballs last night (I just boiled some spaghetti and heated up the sauce), and I think it was a hit. We had no leftovers, anyway.
Sunday was church, and guess what, they moved the Young Women room for me! It used to be up a half-flight of stairs and now we're down on the regular floor so I don't have to try to navigate the stairs. I feel bad, though, because the only available closet is in that upstairs room, so now the girls have to lug everything up and down the stairs every week.
After church Ben put lights up on the tree and then our home teacher came, bringing Christmas cake which is always welcome. Later on the boys and I decorated the tree. The big boys are now old enough to be interested in this process, and actually help. I believe every year until this one, I've been the sole tree decorator. Of course the ornaments did tend to accumulate right at the arm-level of 3 and 6 year old boys, so I had to surreptitiously reposition some of them, but the end result is beautiful. Ben put up the star that mama got for us when she was here last week.
Monday was back to school for the boys and just me and Mosey at home. He is heavily into these bead thingamajigs that you iron to melt together to form various shapes. Hard to explain. He's made probably 8 of them so far, and he spent most of the day after preschool making more. Well, he starts them anyway, and then comes up to me and tells me he *needs* my help, so then I go and finish it for him. I'm sure it's great for his fine-motor skills. Heck, it's great for mine! Mosey is such a funny little guy. He's definitely learning to be a bit more of a contrarian than he has been thus far. The other day I was saying something, I can't remember what, and he says in reply, "Mom, when you tell me something, I just say no!" And isn't that the truth! He's also got this mistaken belief that if he just says "please" often enough and loud enough, that I will ultimately relent. So far he hasn't been justified in this belief, but not for lack of trying on his part.
I also had a long conversation with the stem cell transplant coordinator from Seattle. She was also very positive and I'm getting all my records faxed and mailed up there this week. The only down side of that conversation was when I asked her if this procedure is ever done for MS patients outside of the clinical trial arena, and she said, no, so far it's only been done in studies, it's not the kind of thing you can just ask your doctor to do. I'm not sure I understand the reasons for this, but anyway, it is what it is. So the pressure is still on for me to get accepted into this study.
Yesterday we had our house cleaners come for the second time, and it was great. At least one day every two weeks when I can feel peaceful and calm about the state of affairs in this house. Tonight as I'm looking around, well, it's probably still fairly sanitized, but not so peaceful anymore. This is my fault, though, because this afternoon I was quite occupied getting some stuff ready for mutual tonight, and then the boys had TKD until 6:30 and then I had to run off to Church, leaving Ben with dinner, reading, and bedtime. Tomorrow afternoon I'll put them to work. Anyway, back to yesterday. Stephanie Coleman from my ward (she's the one who's been coordinating everything from the ward) came and took Mosey and me to the mall and then to Burlington Coat Factory to do some Christmas shopping. I'm reminded again why I don't enjoy shopping, but I did make some good progress. And I couldn't have done it without her. I'm doing ok walking short distances around the house, but even walking the length of Burlington a time or two, let alone the mall, wouldn't have been possible. So she pushed me in the wheelchair and carried bags and stuff. I had a great time, although I don't think she got much shopping done for her own family.
In the afternoon after the boys came home from school, my physical therapist came to work with me for about 45 minutes. It was good but very hard, and honestly a little depressing. I know, I know, two weeks ago I could barely move my toes, and today I'm walking, so what's there to be depressed about? And I'm not really depressed, it's just... weird. One of the exercises she had me do was to sit on the edge of the couch with my feet extended on the floor and then draw my feet back toward the couch. This is to work on the hamstrings. Ok, so I barely managed to do 10 with my right leg, and then with my left (my worse side), I *barely* was able to do four before my leg just wouldn't obey me anymore. The boys were watching me, and Joseph was very proud of himself as he was sitting on the floor also doing the exercises, and excitedly telling me how many *he* could do... She's coming three times a week for three weeks so we'll see how much I can get back. I don't know how much I am going to regain after this last attack. I'm not going to get as much back as I did after my last round of steroids, I can tell that already, but I do think in two or three weeks, if given plenty of time, and a very straight, very flat surface, I could do the 100 meters without a cane. A day or two ago I was feeling a bit more cocky, but today I was in the bathroom just walking to the closet (thinking I didn't need my cane since I was just going from the bedroom into the bathroom) and somehow lost my balance and ended up on my back on the tile floor. So that kind of sobered me up a little. And I'm sporting another lovely bruise, this time on my backside. Sigh... I am getting better at falling, though, isn't that a great skill to have? You have to think FAST when you're falling, and try to land in the least painful way. I didn't smack my head on the tile floor, which I very well might have considering the way I fell, so I was pretty proud of myself. I'll definitely need to add that life skill to my resume, don't you think?
But other than my lovely bathroom acrobatics, today was a good day; I drove my van!! I felt good driving, too, my legs were able to do what they needed to do to drive safely I thought. Mosey and I did a couple of errands and I think he was just happy to not be trapped in the house all day with me! After school the boys played, Brigham and Mosey very busily making more bead creations. Joseph wanted to make one too, but he just doesn't enjoy the little detail work, and he kept accidently knocking his beads off and getting really frustrated and crying. Finally I told him that he had to either pull himself together, or I wasn't going to let him play with the beads anymore. I told him the beads are supposed to be fun, and if it isn't fun for him, there is no point in doing it! I told him that Dad really doesn't like doing that kind of stuff and it's perfectly ok if he doesn't either. He actually seemed to accept this pretty well, and then brought in Mosey's tricycle and rode it around and around the house instead. :-)
Brigham was SO excited this afternoon. I think he's been bitten by the Christmas bug. He was so funny talking with Mosey, at one point he said, "When I talk to you, do you get excited and have the feeling that we're going to Disney World?" And Mosey answers, "Yeah, I think I do!!" The two of them can get *really* enthusiastic about stuff. Earlier, when opening one of the bags of beads, Brigham accidently spilled a whole bunch of them. I sighed loudly and told him he needed to let ME open those bags up, and he said, "I'm sorry you are stressed out, mom, don't worry, I will pick them up, I don't want you to have to do more work." Awwwww, isn't he sweet? Of course, I did end up cleaning up most of it because those little beads just roll away whenever you try to sweep them, it's really pretty hard. As I was sitting on the floor (ouch, on my poor, bruised bum!) sweeping them up with a broom and dustpan, Brigham says, "Mom, you're really GOOD at that!" Yes, I am very talented.
Tonight we had a "Gifts from the Heart" program for mutual which was beautiful and fun. Everyone brought or did something demonstrating a gift they've been given, and then our YW Pres did a really good job pulling it all together and talking about using our gifts to give to others, how gifts from the heart are much better than any other kind. She did a really good job and I can't do her justice trying to describe it. There was artwork, crafts, music, food, story-telling, and a really nice slideshow one of the girls put together with pictures of Christ set to "What Child is This." It was nice.
And now it is 10:16 and time for me to go to bed!!
Thanks for reading my laundry list of everything that's been going on in the last few days. Note that there was no actual laundry listed anywhere on that laundry list. That is because Ben has been doing the laundry. My hero...
We had a really nice weekend, before it got cold. Last Friday night we went to eat at a Chinese restaurant that had been recommended to us, and I was not disappointed. It's hard to find a good Chinese place, either they're way too Americanized or just a little iffy in the sanitation department. But this was a very nice place (but not too nice, or we couldn't bring the boys!), and very good food. Afterwards we went to a Christmas tree lot and picked out a tree. I'm not sure what kind of tree it is, but it is the best tree we've ever had! It must have been cut very recently because the needles are all still soft and green, and it is naturally just the perfect cone shape. Ben got it all trimmed and set up in the Christmas tree stand that night while the boys rode their bikes in the driveway.
Saturday morning was our ward's Christmas breakfast. This in lieu of a ward dinner, and I thought it was great. MUCH better for kids to have a breakfast, than to be up too late and tired and grumpy sitting through a program. There were musical numbers, our bishop spoke, and good food. This was my first time showing up at our Church building in more than a month! (Because we had Stake conference, and then we were gone to AZ for two Sundays in a row, and then I was in the hospital). It was nice to see everyone and everyone was really, really nice and came and asked how I was doing and everything.
After the breakfast the boys rode their bikes in the parking lot again. A few months ago I had brought them all up to the Church to practice on their bikes, and they just weren't quite big enough/strong enough/coordinated enough, so it was fun to see how they've grown and improved since then. Then we did a Walmart grocery store run to get a bunch of food ready for the afternoon. At 2:00 three Young Women from my ward came over and helped me make food. I'm going to try a once a month (or maybe once every two week) cooking thing to simplify things around here, and to give my kids something better to eat that frozen pizza, macaroni and cheese, and ramen noodles! LOL! So we made meatballs and chicken paprakash (sp?), and chicken enchiladas, and now my freezer is full. The girls were great, they did most of the work and I sat at the table and directed, and afterward they cleaned everything up! I think they had fun, too. We ate about half the meatballs last night (I just boiled some spaghetti and heated up the sauce), and I think it was a hit. We had no leftovers, anyway.
Sunday was church, and guess what, they moved the Young Women room for me! It used to be up a half-flight of stairs and now we're down on the regular floor so I don't have to try to navigate the stairs. I feel bad, though, because the only available closet is in that upstairs room, so now the girls have to lug everything up and down the stairs every week.
After church Ben put lights up on the tree and then our home teacher came, bringing Christmas cake which is always welcome. Later on the boys and I decorated the tree. The big boys are now old enough to be interested in this process, and actually help. I believe every year until this one, I've been the sole tree decorator. Of course the ornaments did tend to accumulate right at the arm-level of 3 and 6 year old boys, so I had to surreptitiously reposition some of them, but the end result is beautiful. Ben put up the star that mama got for us when she was here last week.
Monday was back to school for the boys and just me and Mosey at home. He is heavily into these bead thingamajigs that you iron to melt together to form various shapes. Hard to explain. He's made probably 8 of them so far, and he spent most of the day after preschool making more. Well, he starts them anyway, and then comes up to me and tells me he *needs* my help, so then I go and finish it for him. I'm sure it's great for his fine-motor skills. Heck, it's great for mine! Mosey is such a funny little guy. He's definitely learning to be a bit more of a contrarian than he has been thus far. The other day I was saying something, I can't remember what, and he says in reply, "Mom, when you tell me something, I just say no!" And isn't that the truth! He's also got this mistaken belief that if he just says "please" often enough and loud enough, that I will ultimately relent. So far he hasn't been justified in this belief, but not for lack of trying on his part.
I also had a long conversation with the stem cell transplant coordinator from Seattle. She was also very positive and I'm getting all my records faxed and mailed up there this week. The only down side of that conversation was when I asked her if this procedure is ever done for MS patients outside of the clinical trial arena, and she said, no, so far it's only been done in studies, it's not the kind of thing you can just ask your doctor to do. I'm not sure I understand the reasons for this, but anyway, it is what it is. So the pressure is still on for me to get accepted into this study.
Yesterday we had our house cleaners come for the second time, and it was great. At least one day every two weeks when I can feel peaceful and calm about the state of affairs in this house. Tonight as I'm looking around, well, it's probably still fairly sanitized, but not so peaceful anymore. This is my fault, though, because this afternoon I was quite occupied getting some stuff ready for mutual tonight, and then the boys had TKD until 6:30 and then I had to run off to Church, leaving Ben with dinner, reading, and bedtime. Tomorrow afternoon I'll put them to work. Anyway, back to yesterday. Stephanie Coleman from my ward (she's the one who's been coordinating everything from the ward) came and took Mosey and me to the mall and then to Burlington Coat Factory to do some Christmas shopping. I'm reminded again why I don't enjoy shopping, but I did make some good progress. And I couldn't have done it without her. I'm doing ok walking short distances around the house, but even walking the length of Burlington a time or two, let alone the mall, wouldn't have been possible. So she pushed me in the wheelchair and carried bags and stuff. I had a great time, although I don't think she got much shopping done for her own family.
In the afternoon after the boys came home from school, my physical therapist came to work with me for about 45 minutes. It was good but very hard, and honestly a little depressing. I know, I know, two weeks ago I could barely move my toes, and today I'm walking, so what's there to be depressed about? And I'm not really depressed, it's just... weird. One of the exercises she had me do was to sit on the edge of the couch with my feet extended on the floor and then draw my feet back toward the couch. This is to work on the hamstrings. Ok, so I barely managed to do 10 with my right leg, and then with my left (my worse side), I *barely* was able to do four before my leg just wouldn't obey me anymore. The boys were watching me, and Joseph was very proud of himself as he was sitting on the floor also doing the exercises, and excitedly telling me how many *he* could do... She's coming three times a week for three weeks so we'll see how much I can get back. I don't know how much I am going to regain after this last attack. I'm not going to get as much back as I did after my last round of steroids, I can tell that already, but I do think in two or three weeks, if given plenty of time, and a very straight, very flat surface, I could do the 100 meters without a cane. A day or two ago I was feeling a bit more cocky, but today I was in the bathroom just walking to the closet (thinking I didn't need my cane since I was just going from the bedroom into the bathroom) and somehow lost my balance and ended up on my back on the tile floor. So that kind of sobered me up a little. And I'm sporting another lovely bruise, this time on my backside. Sigh... I am getting better at falling, though, isn't that a great skill to have? You have to think FAST when you're falling, and try to land in the least painful way. I didn't smack my head on the tile floor, which I very well might have considering the way I fell, so I was pretty proud of myself. I'll definitely need to add that life skill to my resume, don't you think?
But other than my lovely bathroom acrobatics, today was a good day; I drove my van!! I felt good driving, too, my legs were able to do what they needed to do to drive safely I thought. Mosey and I did a couple of errands and I think he was just happy to not be trapped in the house all day with me! After school the boys played, Brigham and Mosey very busily making more bead creations. Joseph wanted to make one too, but he just doesn't enjoy the little detail work, and he kept accidently knocking his beads off and getting really frustrated and crying. Finally I told him that he had to either pull himself together, or I wasn't going to let him play with the beads anymore. I told him the beads are supposed to be fun, and if it isn't fun for him, there is no point in doing it! I told him that Dad really doesn't like doing that kind of stuff and it's perfectly ok if he doesn't either. He actually seemed to accept this pretty well, and then brought in Mosey's tricycle and rode it around and around the house instead. :-)
Brigham was SO excited this afternoon. I think he's been bitten by the Christmas bug. He was so funny talking with Mosey, at one point he said, "When I talk to you, do you get excited and have the feeling that we're going to Disney World?" And Mosey answers, "Yeah, I think I do!!" The two of them can get *really* enthusiastic about stuff. Earlier, when opening one of the bags of beads, Brigham accidently spilled a whole bunch of them. I sighed loudly and told him he needed to let ME open those bags up, and he said, "I'm sorry you are stressed out, mom, don't worry, I will pick them up, I don't want you to have to do more work." Awwwww, isn't he sweet? Of course, I did end up cleaning up most of it because those little beads just roll away whenever you try to sweep them, it's really pretty hard. As I was sitting on the floor (ouch, on my poor, bruised bum!) sweeping them up with a broom and dustpan, Brigham says, "Mom, you're really GOOD at that!" Yes, I am very talented.
Tonight we had a "Gifts from the Heart" program for mutual which was beautiful and fun. Everyone brought or did something demonstrating a gift they've been given, and then our YW Pres did a really good job pulling it all together and talking about using our gifts to give to others, how gifts from the heart are much better than any other kind. She did a really good job and I can't do her justice trying to describe it. There was artwork, crafts, music, food, story-telling, and a really nice slideshow one of the girls put together with pictures of Christ set to "What Child is This." It was nice.
And now it is 10:16 and time for me to go to bed!!
Thanks for reading my laundry list of everything that's been going on in the last few days. Note that there was no actual laundry listed anywhere on that laundry list. That is because Ben has been doing the laundry. My hero...
Friday, December 07, 2007
Good news on the stem cell transplant front
I finally have been able to speak with some actual humans at a couple of the study centers, and got some different and better news than I got from the person at Baylor. The contact at Baylor told me I must have tried and failed all four of the standard MS drugs in order to be considered for the study. There are three different interferon drugs, and two (Rebif and Avonex) are actually the exact same interferon, just a different delivery system, and then glutiramer acetate (Copaxone). I've done Copaxone and Rebif, but not Avonex or Betaseron. I was really upset to hear this because she told me I'd need to be on those other two drugs, one at a time, for at least "several months" and continue to show progression in my disease in order to have "failed," and therefore qualify for the study. This was upsetting because the last thing I should do is waste more months of my life trying drugs that already have been shown to be ineffective for progressive MS.
Anyway, I talked to contacts from Southwestern and University of Washington, and both of them told me I did NOT have to have taken all four drugs, and both thought I sounded like a good candidate for the study.
The Texas centers are just about ready to start recruiting patients (the next 3-4 weeks), and Seattle is already recruiting patients. In fact, they've already finished the procedure in 3 patients already. So I can start the screening process as soon as possible either in Seattle or at City of Hope in LA (I haven't talked with an actual human there, yet, but supposedly they are also currently recruiting patients), and then when the Texas centers are ready to go, they can switch me over to one of them. That sounds like a good plan to me!
The other thing I learned is that it will probably take around 6 months from the start of screening to the actual transplant. This is because I will have to get medical insurance approval for the trial. The funding for the trial doesn't cover the actual procedure and hospitalization. This is good and bad news. Bad news because it takes so long!! I'm afraid of what can happen in 6 months. Also bad because the point they "capture" my disability level is not at the very beginning of the process, but somewhere down the line. So I need to try to stay as healthy as I possibly can. They did say that even if I deteriorate after the point that they've "captured" my disability, it doesn't matter, I can still participate. But it is good news because apparently at least in Seattle, they have not had problems eventually gaining approval from the various patients' insurance companies. I guess they have coding procedures that help this along. The transplant itself is not experimental, just its application in MS. So anyway, if anyone knows anyone who works in claims for United Health Care, let me know!!! I need a friend there who can expedite things as quickly as possible. But the really good thing is that even if for whatever reason I do not get into this trial, apparently there is a possibility of getting insurance to pay for it anyway.
So, that's the news.
One other note. I know it may sound as if I am totally hanging my hat on the hope that this transplant will "cure" me. I can hear myself as some of you may hear me, and I know that some of you are concerned that I'm starting to really count on this working, and that I'm blinding myself to its risks, and the real possibility that it will not work for me. I just want you to know this is not the case. We understand the risks, believe me. But the mortality rates have gone down dramatically in just the 10 years this has been done in Europe, and the risks of me dying from this procedure are almost certainly smaller than the risk of me dying from this form of MS over the next 5 years. That's the dirty little secret about this form of aggressive MS. People actually die from it. There will be all sorts of psych evaluations to make sure we fully understand the risks before we'd ever be approved for this anyway. And as for us counting on this "curing" me, we're not. So far this procedure has not been a "cure." First of all, there is no way to reverse nerve damage that has already taken place. I'll never be "normal" again, and that's a fact. However, this procedure has been very successful in halting or greatly slowing the progress of the disease for at least a few years. The longest they've tracked patients so far is 5 years, and there are a good percentage of patients that have remained in remission for that long. And any time I do gain in remission is that much longer I can raise my kids without being totally disabled. And it buys me that much more time as new medications and treatments come down the pike. So in the event that my MS returns (and in all probability it will, eventually), hopefully several years down the line, my treatment options will (I hope) be better than they are now.
And the fact is, I don't have a lot of options. There are two other drug options that I could pursue (Tysabri, Fingolomid), and definitely will pursue if this transplant doesn't pan out for whatever reason. But taking these drugs now will disqualify me for the transplant, so I feel I need to follow this path to its end before I go the Tysabri/Fingolomid route. There are some clinical trials for new medications that I could sign up for, but none that are offering the kind of chance for remission as the transplant study. Plus, you enter into these trials for medications to take for 5 years or whatever, and you have a 50% chance of getting the placebo. Nice. Yes, I understand the need for double blind studies and all that, but I sure have a different perspective as the patient that is desperately looking for something to help me! I don't want a placebo!! Or I could do Novantrone for 3 years, hope it doesn't damage my heart permanently, all the while realizing it has never shown much benefit for anything other than secondary progressive MS which I don't have. And after 3 years, what then? The Cytoxan is still an option but this is apparently losing favor among neurologists because it is such a harsh treatment for such mild benefits. Honestly, my options are quite grim, and the transplant study has by far the most potential for really making a difference in my life. So we are running with it for now. It is giving me hope, and that's a big thing for me. I need to feel that there is some hope! But I'm not blind or stupid. I know it might not work, and if that happens, we'll deal with it. I'm not going to commit suicide or anything if it doesn't work. But I need to know I have tried EVERYTHING. And I need to try it NOW while I still have nerve function left to save!
So that is my big disclaimer. From here on out, I will probably act pretty enthusiastic about the stem cell transplant (because I do feel enthusiastic!), but please understand that I'm not blind or stupid. I won't give this disclaimer every time I speak of this procedure, so just consider it understood, ok?
I promise my next post will contain NOT A WORD about all this yucky stuff. I just know that some of you want to know.
Anyway, I talked to contacts from Southwestern and University of Washington, and both of them told me I did NOT have to have taken all four drugs, and both thought I sounded like a good candidate for the study.
The Texas centers are just about ready to start recruiting patients (the next 3-4 weeks), and Seattle is already recruiting patients. In fact, they've already finished the procedure in 3 patients already. So I can start the screening process as soon as possible either in Seattle or at City of Hope in LA (I haven't talked with an actual human there, yet, but supposedly they are also currently recruiting patients), and then when the Texas centers are ready to go, they can switch me over to one of them. That sounds like a good plan to me!
The other thing I learned is that it will probably take around 6 months from the start of screening to the actual transplant. This is because I will have to get medical insurance approval for the trial. The funding for the trial doesn't cover the actual procedure and hospitalization. This is good and bad news. Bad news because it takes so long!! I'm afraid of what can happen in 6 months. Also bad because the point they "capture" my disability level is not at the very beginning of the process, but somewhere down the line. So I need to try to stay as healthy as I possibly can. They did say that even if I deteriorate after the point that they've "captured" my disability, it doesn't matter, I can still participate. But it is good news because apparently at least in Seattle, they have not had problems eventually gaining approval from the various patients' insurance companies. I guess they have coding procedures that help this along. The transplant itself is not experimental, just its application in MS. So anyway, if anyone knows anyone who works in claims for United Health Care, let me know!!! I need a friend there who can expedite things as quickly as possible. But the really good thing is that even if for whatever reason I do not get into this trial, apparently there is a possibility of getting insurance to pay for it anyway.
So, that's the news.
One other note. I know it may sound as if I am totally hanging my hat on the hope that this transplant will "cure" me. I can hear myself as some of you may hear me, and I know that some of you are concerned that I'm starting to really count on this working, and that I'm blinding myself to its risks, and the real possibility that it will not work for me. I just want you to know this is not the case. We understand the risks, believe me. But the mortality rates have gone down dramatically in just the 10 years this has been done in Europe, and the risks of me dying from this procedure are almost certainly smaller than the risk of me dying from this form of MS over the next 5 years. That's the dirty little secret about this form of aggressive MS. People actually die from it. There will be all sorts of psych evaluations to make sure we fully understand the risks before we'd ever be approved for this anyway. And as for us counting on this "curing" me, we're not. So far this procedure has not been a "cure." First of all, there is no way to reverse nerve damage that has already taken place. I'll never be "normal" again, and that's a fact. However, this procedure has been very successful in halting or greatly slowing the progress of the disease for at least a few years. The longest they've tracked patients so far is 5 years, and there are a good percentage of patients that have remained in remission for that long. And any time I do gain in remission is that much longer I can raise my kids without being totally disabled. And it buys me that much more time as new medications and treatments come down the pike. So in the event that my MS returns (and in all probability it will, eventually), hopefully several years down the line, my treatment options will (I hope) be better than they are now.
And the fact is, I don't have a lot of options. There are two other drug options that I could pursue (Tysabri, Fingolomid), and definitely will pursue if this transplant doesn't pan out for whatever reason. But taking these drugs now will disqualify me for the transplant, so I feel I need to follow this path to its end before I go the Tysabri/Fingolomid route. There are some clinical trials for new medications that I could sign up for, but none that are offering the kind of chance for remission as the transplant study. Plus, you enter into these trials for medications to take for 5 years or whatever, and you have a 50% chance of getting the placebo. Nice. Yes, I understand the need for double blind studies and all that, but I sure have a different perspective as the patient that is desperately looking for something to help me! I don't want a placebo!! Or I could do Novantrone for 3 years, hope it doesn't damage my heart permanently, all the while realizing it has never shown much benefit for anything other than secondary progressive MS which I don't have. And after 3 years, what then? The Cytoxan is still an option but this is apparently losing favor among neurologists because it is such a harsh treatment for such mild benefits. Honestly, my options are quite grim, and the transplant study has by far the most potential for really making a difference in my life. So we are running with it for now. It is giving me hope, and that's a big thing for me. I need to feel that there is some hope! But I'm not blind or stupid. I know it might not work, and if that happens, we'll deal with it. I'm not going to commit suicide or anything if it doesn't work. But I need to know I have tried EVERYTHING. And I need to try it NOW while I still have nerve function left to save!
So that is my big disclaimer. From here on out, I will probably act pretty enthusiastic about the stem cell transplant (because I do feel enthusiastic!), but please understand that I'm not blind or stupid. I won't give this disclaimer every time I speak of this procedure, so just consider it understood, ok?
I promise my next post will contain NOT A WORD about all this yucky stuff. I just know that some of you want to know.
Home from the hospital!!
Don't look too closely at this picture. Because, um, yeah, I've looked better. My kids are cute though!
Ok, this is going to be an incredibly self-obsessed post. I'm only going to talk about me, so if that is going to annoy you, you've been warned! I am going to write this not just for those of you who want to know, but also for my own records. I've been trying to create a timeline of the appearance of various M.S. symptoms, and I've found that going through my archives of past emails I've sent is the most accurate record of what's beeng going on with my illness. So anyway, sorry in advance for the boring laundry list of medical stuff.
Well after 10 long days in the hospital, I am HOME!!! The hospital stay was pretty good. I went down to MRI the first night I was there, and that was pretty grueling. Three hours in the MRI machine isn't too fun. In the past I've been able to kind of zone out in the MRI and it hasn't been too bad. But this time I had to do the brain and spinal cord, with and without contrast dye, all back to back. So it was a VERY long time. The worst of it was the spinal MRI. That one takes the longest. They scan your whole spinal cord and then pull you out and inject this dye in your vein and then do the whole thing again. But you can't move at all! You have to remain completely still for the whole thing. They strap your head in this sort of vice thingy, and the MRI machine is this little tube so you can't really move anyway, even if you tried. Unfortunately, I got my head on a bad pressure point and not even all the way through the first half of the spinal scan, the back of my head began to really hurt. And then my sinuses didn't like something in that room and I couldn't breathe out of one side of my nose with absolutely drives me INSANE. And I couldn't move at all! The pain from my head and the annoyance of not being able to breathe right were bad, but the worst of it was knowing there was absolutely nothing I could do about either one, and I had no idea how long I had left to lie there. There's no clock or anything to be able to count down, and you really do lose track of reality while you are in the machine. Toward the end I was seriously getting close to a panic attack, wondering if I should just call out and tell the MRI tech I couldn't take it anymore, or what! But I made it, she pulled me out, moved me over to the brain coil, and then I was able to get my head in a more comfortable position, I could breathe slightly better, and I knew it would be over soon. I felt like such a baby because it wasn't as if I were in excruciating pain or anything even close to it. I was just getting panicked and didn't think I could do it!! The MRI tech was really nice, though. It was actually her second to the last day working at the hospital, and her last night on call. She came up to see me the next evening to say goodbye, and I thought that was really sweet. I don't think she went to say goodbye to all her patients!
So anyway, for the first 5 days I was up on the acute care floor, I had my own room and lots of time to do nothing. I read through the conference edition of the Ensign, read "The Road to Serfdom," watched some movies, read through the last couple of months of Time Magazine, slept, and did a couple of sessions with Physical Therapy. On Friday night they moved me down to the inpatient rehab clinic and that wasn't quite so pleasant. I had to share a room with a woman who had broken her hip. The first couple of nights she was in a lot of pain and woke up frequently groaning and moaning. She also was not as pleasant to some of the nurses as she could have been, and spent most of her time when the doctor came to see her, badmouthing her other doctor that did her first hip replacement (I guess her first hip replacement had become lose, and she was getting ready to come in for a revision when she fell and broke her OTHER hip!). It is not a good idea to badmouth a doctor to another doctor! She was also had long and frequent telephone conversations with lots of people where she felt the need to complain about the nurses, doctors, physical therapists, etc., etc., etc. I was feeling pretty sorry for myself for the first couple of days. Then I got really disgusted with myself and realized that I was being incredibly self-centered. I realized that I was so lucky compared to most of the other patients there, because I was not in any pain. Many patients were there because of injury or surgery, and their rehab was so much more difficult than mine. How can I begrudge this woman her right to complain and have loud phone conversations when she was certainly in pain the whole time. Anyway, she went home on Tuesday so my last three days were quiet and peaceful. In rehab they have you do several sessions with Occupational Therapy and Physical Therapy each day. OT, for those who don't know, is sort of like "life skills." They teach you how to do things around the house, laundry, dishes, making beds, etc. They have a couple of rooms set up like a house, with a bathroom area, kitchen, laundry, bed, closet, etc. Physical Therapy is just physical stuff, exercises and stretching and stuff. It was great, day by day, to see the clock turn backwards and be able to regain skills I didn't have the day before.
I was worried the transition home would be hard. It was the last time I was hospitalized. But I'm doing fine! I had a little breakdown at the hospital the night before I left, not really about anything in particular, just generalized anxiety and worry about what was going to happen. When I was in the hospital, I felt like I was "doing" something (even though I was doing nothing!), and the idea of going home just to wait for symptoms to come back was pretty depressing. But yesterday afternoon and today have been just fine. I'm so glad to be with my boys again, the weather has been gorgeous, and I had some good conversations with the contact people at a couple of the Halt-MS study centers.
So I feel very good, not least because I am doing so much better physically than I was when I left!
OK, so here's where I'm going to document symptoms and stuff, so ignore if you want. This is just for my records.
I had 5 days of Solumedrol treatment (the IV steroids) in the hospital and I'm on a tapering dose of Prednisone for the next month to try to extend the benefit of this round of steroids as long as possible. As you all know, I just LOOOOOVE steroids, so I'm SUPER excited to get to be on them for the next month!! (Insert dripping sarcasm). But I'll take it if it gives me a longer time feeling good!
I'm also on 20mg Baclofen 3 times a day. I started taking the Baclofen at the lower dose, 10mg 3x/day a month ago, but it really wasn't controlling my spasticity. The 20mg 3x/day seems to be working pretty well. I can feel the spasticity creep up when it gets close to my next dose, but not to any degree like it was before. At first the Baclofen was giving me headaches and making me feel nauseated, but I think I've mostly adjusted and except for a few headaches here and there, it's not too bad. This is a pretty intense drug, though, one of the big warnings on the label is NOT to discontinue use suddenly because doing so can cause hallucinations and seizures. Nice, huh? It works, though.
It is really amazing the difference 10 days makes. I am up walking around, that's the biggest thing. I don't think I need the walker I was using in the hospital (also it is the ugliest thing imaginable, no way to glam that thing up!), so my cane and I are getting to be friends again. I am using the wheelchair to wheel myself longer distances, not really because I need it, but just to try to conserve energy (this was a big thing I was working on with the occupational therapists in the hospital). But it is amazing to be able to just stand up when I want to, and walk when I need to!
In the hospital, I started seeing results from the steroids pretty quick, after just a couple of days. It was really exciting to wake up each day and discover more that I could do than I could do the day before, instead of the other way around! One of the biggest reliefs to me was getting my foot-flexing muscles back. Man, there were so many times when I just wanted desperately to be able to flex my feet! I made Ben come over and flex them for me sometimes, but that inability to move my feet was extremely disconcerting, especially at night. And then, getting my hip flexor muscles back was huge! That's a pretty important muscle for walking, as it allows you to lift your foot off the ground. I had been "walking" by sort of slinging my hips so that my leg would swing around, or else just dragging my foot along the floor. This is a very exhausting and dangerous way of walking! But probably the biggest help to me was getting my abdominal muscles back. I never realized that you use your abdominal muscles for nearly everything. Everything from sitting up, turning over in bed, raising your body from, for example, a chest-to-knees position, everything. I'm also feeling much better in more subtle ways. For example, I have lots of trouble controlling my blood pressure when my M.S. is acting up. I've noticed this periodically during bad times of MS I will have trouble blacking out whenever I stand up, or even sit up too fast. In the hospital, it was interesting to see how that stabilized over the days I was there. The first few days I was there, my blood pressure was all over the place. Mostly very low (85/50), but occasionally randomly really high (120/80, which is very high for me). As the steroids kicked in, I stabilized to where I normally am (110/68), and stayed almost EXACTLY there, only varying by a couple points at the most. I think just the fact of having stabilized blood pressure has had a huge impact on my overall feeling good. My breathing has gotten much better, too. I had one final bad breathing episode on Sunday night, but nothing since then. The deal with my breathing was two fold. First, I had a sensation of a belt tightening around my ribs, compressing my ribs and making it difficult to inhale. This was the strangest sensation, because for the life of me, it felt JUST like a belt really was around my ribs! I'd have to feel to make sure there wasn't anything there! Not just the tightness, but on my skin I really felt the sensation of something wrapped tightly around me. It is really bizarre to have your body telling you one thing, and your eyes telling you another. But the other thing with my breathing was being unable to control my diaphragm very well. I've noticed this over the past couple of months, mostly at church when trying to sing. Being able to sing well depends entirely on being able to control your diaphragm (well, ok, being able to match pitch is important too!). I do not have correct vibrato technique-- I know you're supposed to actually use your vocal cords to produce the vibrato, but I never learned how to do that, so I do it using my diaphragm. Well, over the past couple of months, I became unable to do produce vibrato at all. And I just couldn't draw enough breath to be able to sing through more than a measure or two at most. Reading scriptures to my boys in the morning was laughable, because I'd have to stop and take another breath every 3 or 4 words. Anyway, last Sunday I got a "pass" to be able to come home for a couple of hours. We watched the First Presidency's Christmas broadcast, and I discovered I could sing again!! It was great! I've been able to sleep much better as well, not waking up feeling like I was forgetting or unable to breathe.
Other random things that have also improved my quality of life: ITCHING has stopped. Another weird MS symptom is generalized, random itching. Do you ever get an itch, and then try to scratch, but find that when you scratch, it's not really that place that itches? Does that make any sense? It really drives me crazy!! But that's gone away since the steroids. Bladder spasticity is much better. Ok, I know this is way TMI, but I seriously had to get up to the bathroom EVERY TWO HOURS!! My bladder was so spastic, it couldn't expand hardly at all, so I'd have to pee all the time. I felt like an old man. It's also really hard to sleep when you have to get up every two hours, and ESPECIALLY when it take you 10 minutes just to get yourself up out of bed, into the wheelchair, into the bathroom, and then back and into bed again. So the combination of not having to use the wheelchair just to go across the room to the bathroom, and then not having to get up every 2 hours, has been so, so great.
In the week before I went in to the hospital, I was struggling with feelings of claustrophobia. I never thought about claustrophobia in terms of paralysis, but it was awful. I couldn't move my legs, and I would start to feel trapped, even though I wasn't physically confined by anything. This was especially troubling at night. That added with my issues breathing, and I came close to having full-blown panic attacks. I asked my doctor about the claustrophobia thing, and he said the feeling of claustrophobia is more related to feeling powerless and out of control, rather than a physical reaction to being confined. That made sense to me. I wonder of para/quadraplegics have that problem? I guess you'd get used to it after a while.
So that's the run down on what's going on with me symptomatically. I feel like I'm back where I was about 4 weeks ago in terms of my ability to walk. I feel ok walking short distances without my cane (like, from my desk to the kitchen table, etc.), but it's definitely still hard. My legs still feel very weak and stiff. I know some of that is muscle atrophy after not being able to walk for a few weeks, and that should come back with use and physical therapy. But some is probably also due to nerve damage. It will be interesting to see how much more improvement I see over the next week or so. I'll be doing physical and occupational therapy 3 times a week for the next three weeks to maximize the improvement from the steroids. I have a little anxiety over this, because I am going to be finding out where my new "baseline" is, and I'll have to reconcile myself to whatever remains as likely being permanent. But honestly, it's ok. I feel like I'd be more than ok for the rest of my life if I can just stay where I am right now!!
Ok, I better go now since I'm ignoring my kids and they are doing experiments and that is never a good sign.
I'm just so glad to be home!
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