January 23, 2012

Not much new to report

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 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!!!!!!!!

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!

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.