Things have returned to normal around the Loy house. But, of course, things are changing, as well.
I started picking up extra hours at the imaging center. It's been good so far. They're training me on the DEXA (bone density) machine and I'm going to be working my first Saturday this weekend by myself. The UAA students also started up their spring semester, and that always adds a challenge to my days.
Todd and I are changing Mason's preschool/daycare situation. It was a LOOOOOONNNG and very hard decision to make, but I (we) really feel like it will be the best for everyone, especially Mason. He has two more weeks left at JEC and then he'll start at the Providence daycare in their preschool room. Hopefully sometime soon we'll get a chance to take Mason by there to see it and meet his new teachers so it won't be such a huge shock on his first day.
I'm going on almost 7 weeks without any MS meds. I'm not sure if things seem like they're worse because I know that or not, but hopefully everything will calm down either way. I did go by my neurologist's office today to fill out the Copaxone paperwork. Dr. Burt (Chicago study doctor) wants me to at least be on this while we wait for my insurance to respond and the Tysabri to fully get out of my system. I'm not looking forward to doing shots every day again, but hopefully it won't be for too long.
Today was 15 degrees above zero, which felt so warm after what felt like forever of 15 degrees below.
Like I said, not much new to report.
January 23, 2012
January 13, 2012
Tebowie
This is probably the funniest Tebow parody I've seen yet. I love you, Jimmy Fallon!
Oh, and, just for the record.....GO PATRIOTS!!!!!!!!
Oh, and, just for the record.....GO PATRIOTS!!!!!!!!
He knows me so well
Todd got me personalized plates for Christmas. I was first shocked they weren't already taken, and then I just smiled because my husband knows me so very well (and loves me anyway)
On the Big Screen
It should be no shock to anyone reading this that actually knows me that I love to read. In fact, that is probably the number one complaint I have about motherhood is that I have no time anymore to read, and when I do have time I usually fall asleep! That being said, it should also be no surprise that I am absolutely one of those people who are incredibly reluctant to see a movie that has been made from a book I love.
My faith lately has been somewhat rekindled, however. First, there was the Girl with the Dragon Tattoo series...the subtitled, Swedish version (I basically refuse to see the Daniel Craig, American version). AMAZING! If you haven't seen them, you need to. Even without reading the books, they are fantastic.
It was even further rekindled when I watched The Help on my recent flight back to Anchorage. (I also watched Friends with Benefits and laughed my ass of on the plane). Anyway, The Help was probably my favorite book that I read last year. So much that I even read it twice! I was really reluctant to see the movie, but I kept hearing so many wonderful things about it I finally checked it out. It was so wonderful, and even more incredible was that, not one time did I think, "Ugh, this is nothing like the book!" I still recommend reading the book first, I just wouldn't be me if I didn't.
So this leads me to actually wanting to go see a movie that just came out. Jonathan Safran Foer is up near the top of my list of favorite authors, and "Everything is Illuminated" and "Extremely Loud and Incredibly Close" are two of my favorite books. The fist was made into a movie a few years ago, it was a small, independent film that didn't get much attention, which is probably why it was actually done very well.
Now the second has been made into a move, and with my faith being rekindled, I think I may go out on a limb (test my luck, so to speak) and see it.
And to FURTHER test my luck, I also want to see The Hunger Games. I am currently reading the second book in this series and am IN LOVE with all the characters!
My faith lately has been somewhat rekindled, however. First, there was the Girl with the Dragon Tattoo series...the subtitled, Swedish version (I basically refuse to see the Daniel Craig, American version). AMAZING! If you haven't seen them, you need to. Even without reading the books, they are fantastic.
It was even further rekindled when I watched The Help on my recent flight back to Anchorage. (I also watched Friends with Benefits and laughed my ass of on the plane). Anyway, The Help was probably my favorite book that I read last year. So much that I even read it twice! I was really reluctant to see the movie, but I kept hearing so many wonderful things about it I finally checked it out. It was so wonderful, and even more incredible was that, not one time did I think, "Ugh, this is nothing like the book!" I still recommend reading the book first, I just wouldn't be me if I didn't.
So this leads me to actually wanting to go see a movie that just came out. Jonathan Safran Foer is up near the top of my list of favorite authors, and "Everything is Illuminated" and "Extremely Loud and Incredibly Close" are two of my favorite books. The fist was made into a movie a few years ago, it was a small, independent film that didn't get much attention, which is probably why it was actually done very well.
Now the second has been made into a move, and with my faith being rekindled, I think I may go out on a limb (test my luck, so to speak) and see it.
And to FURTHER test my luck, I also want to see The Hunger Games. I am currently reading the second book in this series and am IN LOVE with all the characters!
January 12, 2012
So much for my gut
I'm not going to lie, I did not have a good feeling about this last Chicago trip. I came very close to canceling it a few times as I felt like it was just going to be another disappointment for me that I really did not feel like dealing with.
A little background to catch up any new people (or those of you who may have forgotten how we got to this point).....
I'm taking part in a clinical trial run by Dr. Richard Burt at Northwester Memorial Hospital. Here is his website if you're interested. Anyway, in 2010 I was randomized into the "control" arm of the study, rather than the treatment arm. Control basically means you take Tysabri (an FDA approved drug for MS, supposedly the best out there right now) and get rechecked at predetermined intervals. Treatment is a stem cell transplant (currently the only thing showing any promise as a cure for MS). Needless to say, control was a disappointing group to be in.
The interesting part about this study is that there is an ability to cross-over from the control to the treatment arm if your disability score increases and stays that way after a 6 month period. This is where all my frustration has come in. Not to completely rehash all this, but basically I think the doctor who does the EDSS is completely inconsistent and, well, frankly, I think he is an idiot. So I've been in this weird holding pattern with Dr. Burt, having me go back to Chicago multiple times where I keep getting told that, no, I'm half a point away from being able to cross over.
So this leads me to this week. Another quick two day trip to the windy city by myself, which I was really not looking forward to. And then it happened. The EDSS doctor (oh, did I mention he's the only blinded participant in the study?) gave me a higher EDSS...way higher, actually. I mean, I know I've progressed and acquired some new symptoms, but I didn't think it would be much higher...not that I'm complaining.
I'm now tentatively on for an April/May stem cell transplant! There is so much to do and think about now, the most important being MONEY! (Stay tuned for more info on that)
I'm back home now, exhausted from my quick trip and barely any sleep the past 3 days, but feeling, for the first time since I began this clinical trial, hopeful. It's not a bad place to be in.
P.S. Just don't ask me how I'm going to stand being away from Mason for 2-3 months. It's going to seriously be the hardest part of this whole ordeal, I'm sure. I just have to remember that he's a major reason I'm doing the trial in the first place.
A little background to catch up any new people (or those of you who may have forgotten how we got to this point).....
I'm taking part in a clinical trial run by Dr. Richard Burt at Northwester Memorial Hospital. Here is his website if you're interested. Anyway, in 2010 I was randomized into the "control" arm of the study, rather than the treatment arm. Control basically means you take Tysabri (an FDA approved drug for MS, supposedly the best out there right now) and get rechecked at predetermined intervals. Treatment is a stem cell transplant (currently the only thing showing any promise as a cure for MS). Needless to say, control was a disappointing group to be in.
The interesting part about this study is that there is an ability to cross-over from the control to the treatment arm if your disability score increases and stays that way after a 6 month period. This is where all my frustration has come in. Not to completely rehash all this, but basically I think the doctor who does the EDSS is completely inconsistent and, well, frankly, I think he is an idiot. So I've been in this weird holding pattern with Dr. Burt, having me go back to Chicago multiple times where I keep getting told that, no, I'm half a point away from being able to cross over.
So this leads me to this week. Another quick two day trip to the windy city by myself, which I was really not looking forward to. And then it happened. The EDSS doctor (oh, did I mention he's the only blinded participant in the study?) gave me a higher EDSS...way higher, actually. I mean, I know I've progressed and acquired some new symptoms, but I didn't think it would be much higher...not that I'm complaining.
I'm now tentatively on for an April/May stem cell transplant! There is so much to do and think about now, the most important being MONEY! (Stay tuned for more info on that)
I'm back home now, exhausted from my quick trip and barely any sleep the past 3 days, but feeling, for the first time since I began this clinical trial, hopeful. It's not a bad place to be in.
P.S. Just don't ask me how I'm going to stand being away from Mason for 2-3 months. It's going to seriously be the hardest part of this whole ordeal, I'm sure. I just have to remember that he's a major reason I'm doing the trial in the first place.
January 10, 2012
Groundhog Day
Sometimes I seriously feel like I'm stuck in some crazy cycle that keeps repeating itself...like in the movie Groundhog Day.
Oh, did I mention I'm back in Chicago?
I got here this morning after another long 6+ hour flight. I did use my first free MVP first class upgrade for this flight, and I'm hoping to have the same luck on the way home.
More than that, I'm hoping to have better luck here this time around. I'm really tired of these trips, especially when it keeps feeling like it's all been such a waste of my time.
Here we go again...
Oh, did I mention I'm back in Chicago?
I got here this morning after another long 6+ hour flight. I did use my first free MVP first class upgrade for this flight, and I'm hoping to have the same luck on the way home.
More than that, I'm hoping to have better luck here this time around. I'm really tired of these trips, especially when it keeps feeling like it's all been such a waste of my time.
Here we go again...
January 3, 2012
New Year's Fun
Our new year's weekend was a lot of fun. Todd and I headed up to my family's cabin in Nancy Lake with our two dogs, followed by Cameron, Sarah and their two dogs. Yep, you read that right, no kids!
It was pretty (ok, really) cold up there, but I had fun staying in and relaxing. We played scattegories and cranium, and watched some Will Farrell classics. Of course, I took my Kindle and read a lot, too. Todd had fun finding some incredibly hideous clothes to model for us, including a shirt that no one has any idea what it means. Pretty sure the best quote of the weekend, though, was while we were playing Cranium. It was a clue that had to be drawn, the word was "house husband" and as Todd was drawing it, Sarah blurts out "BROOMING PENIS"!
It was pretty (ok, really) cold up there, but I had fun staying in and relaxing. We played scattegories and cranium, and watched some Will Farrell classics. Of course, I took my Kindle and read a lot, too. Todd had fun finding some incredibly hideous clothes to model for us, including a shirt that no one has any idea what it means. Pretty sure the best quote of the weekend, though, was while we were playing Cranium. It was a clue that had to be drawn, the word was "house husband" and as Todd was drawing it, Sarah blurts out "BROOMING PENIS"!
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| You know you're jealous of our awesomeness |
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| Poor Jake. He's such a laid back guy, it's easy to torture him |
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| Jake thinking he was tiny enough to fit into Duncan's little dog bed. |
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| Beautiful, but really cold |
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| Awesome golf shirt Todd found. I helped complete this look with the hat. |
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| Mini table tennis....across the cabin |
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| You'd never know from this picture, but he was the only sober one in the bunch |
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| Broken glasses fixed just in time for midnight |
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| Poor Duncan, he has no real snout to speak of so holding glasses on his head was not so easy |
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| And Jakers again, wondering when we were going to just go to bed and leave him alone |
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| Here's the shirt no one knows what it means. "Final Entry" |
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| You just had to be there. |
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