Something new

I am feeling like I need a change...I don't know. I worry because usually what happens is that I cut my hair into some bob-like style and I hate it. I'm totally loving these pictures of Sienna Miller, though. What do you think? Can I pull this off???

Wee Bit Wednesday 10!

 {one} what was your favorite sitcom growing up?I loved The Cosby Show and Punky Brewster
{two} what song always makes you happy when you hear it?Jack Johnson "Do You Remember"
{three} do you still have your wisdom teeth?nope. had them pulled after high school
{four} what is your go to way to relax?a glass of wine, a hot shower, and a book
{five} do you play any instruments?yes, although it's been a while. piano, flute, and a little saxophone
{six} nude beaches: yes or no?no. no. no.
{seven} do you chew your pens/pencils?no
 {eight} can you change the oil in your car?yes. my dad made me learn how to change the oil andchange a tire before i got my drivers license. DO i changethe oil in my car, however? Hell no!
{nine} can you curl your tongue?yep!
{ten} can you knit or crochet?i wish. i've tried to learn a few times but i always end upwith a big old knot and i get super pissed off

More random news

The summer seems to be in full swing, and the weather is even trying to cooperate. Mason is so happy with all the time we get to spend playing outside, especially now that he has a new bike to ride. I was worried it would be too big for him and he would just get frustrated, but it turns out he's a natural! He loves to go around the cones in our driveway and have Todd wave the checkered flag for him.

Helping Papa put his new bike together

Having fun

This summer has been my worst allergy summer in a LONG time! I just finished my THIRD round of antibiotics trying to get rid of whatever is going on in my sinuses/ears. I have been put on a new oral allergy med, new allergy eye drops and a new allergy nose spray. I called back in April to see the allergist again but my appointment isn't until August. Bring on the benadryl until then!

I am totally counting down the days until I go to CA to see my friend Mariah. I got my ticket for the Sonoma County Shuttle in the mail and now I'm even more excited. Petaluma, here I come! Oh, wait, it isn't July 13th yet? Damn.

Duncan had his blood levels rechecked. It's been six months since his dough eating ER visit. As expected, the damn dog is indestructible, and that includes his liver. Everything was back within normal ranges. 

We had fun on the boat this last weekend. I'll try to get pictures up soon.

My new favorite person

I have been watching these My Drunk Kitchen videos and laughing my ass off! So, of course I decided they were a must share item. I want to be friends with this girl!

Wee Bit Wednesday 9

{one} how many times have you been a bridesmaid/maid of honor?Four. And, no, I didn't EVER wear ANY of the dresses again.
{two} what’s the last thing your do before you fall asleep at night?Talk to Todd. And lately, when Todd is atwork, I've been watching Lost.
{three} you just won your dream vacation, all expenses paid. where are you going?Europe. I know, so cliche, right? 
{four} what is your favorite outdoor activity?Honestly, I love playing outside with Mason. Especially in his sandbox. He's just so imaginative! I'm alsogetting into golf. And I love kayaking.
{five} as a child, what did you want to “be when you grew up”? did you end up there?An elementary school teacher. No. Although, sometimes I feel like I deal with children at work, this is not the same thing. 
{six} what are 3 things your dream home would have that you don’t currently have?Larger living room, a library (complete with one of thoseladders on wheels), and a maid.
{seven} what’s for dinner tonight?Yikes, good question. Probably something on the grill.
{eight} if someone stopped by your house unannounced on a typical Saturday night, what would they find you doing?Depending on what time, I'd probably be sleeping. I am so exhausted by the end ofthe week, once I get Mason in bed I'm not far behind him. I try toread, but lately that just makes me fall asleep faster.
{nine} what’s your average monthly water bill?We don't have a monthly water bill. I think it averages out to be thirty-something a month. It's a flat rate thing up here.  (Sorry toall our Colorado family. I know this is a sore subject for you all) 
{ten} what do you do to relax?Read, take a hot shower, nap

In the great green room

We have been reading Goodnight Moon since Mason was a teeny little baby. It is very often the last book we read before Mason finally goes to bed at night, and lately it has been fun to have Mason "read" it to us.

Pet Peeves

One of my biggest pet peeves are people who are constantly late. I know I have had the occasional late time or two, but usually I'm the person who is there 10-15 minutes before you told me to meet you.

Now that I am the clinical educator at work, I've become more and more aware of people, especially students, who are 5-10 minutes late. Most jobs, you'd be fired. Just saying.

Wee Bit Wednesday 8

Here we go again! I'm actually having fun doing these...hope you enjoy reading them!





{one} what profession have you always admired?Mothers.
{two} what would the title of your memoir/biography be if it was written today?Hmmm.... My Life in Shoes. I really have so many memories (even as a child) tied to shoes. Examples: my squeakie shoes/my aunt's wedding, my moonboots/birth of baby brother, green velvet doc martens/high school.
{three} how far do you commute to work?Not far. About 4 miles.
{four} are your earlobes attached or detached?Detached.
{five} do you eat the unpopped kernels of popcorn at the bottom of the bag?Yuck, no. 
{six} what is the strangest gift you’ve ever received?A tree frog.
{seven} what is one tv show that you wish hadn’t been cancelled?I just heard Brothers and Sisters is being cancelled, which sucks.
{eight} what is something that you are saving money for right now?Shoes. Always shoes.
{nine} what hobby would you like to take up?Well, first I need to have TIME to take up a hobby, but I'vebeen trying golf lately. Also, I would like to get better at photography. And, while this makes me sound 100 years old, I really wish I could quilt more. Maybe my hobby should be learning how to create more hours in a day!
{ten} how many times a year do you get really dressed up?Really dressed up? That doesn't seem to exist in Alaska. Maybe twice, if I go to both mine and Todd's work related "holiday" parties. 

Like, totally!

I have to admit, I really don't care that much for Katy Perry, but this video is an 80s dream come true!

The rest of the story

So here’s the long story of my awful day yesterday. I started out heading to Rush University Medical Center for my appointment with the neurologist. He is the one who doesn’t know which group patients are in and just does the disability score. When I started the trial a year ago, I was at 2.5, then in December I was at 4. In order for me to be able to cross over into the treatment group, my EDSS needs to be at least one point higher than I started. 

Going into this I knew that the EDSS isn’t a perfect system, but they have to have some way of measuring and rating each patient. The biggest frustration for me is the doctor who performs the EDSS rushes through the entire thing, and doesn’t seem to pay much attention to what you’re telling him. For example, as he’s going through checking boxes, he says “You don’t have _____” and moves on. Well, no, actually I DO have that. Anyway, it’s a super frustrating experience. And to make it even worse he gave me a 3. 

I left his office in tears and called Todd from the sidewalk outside the hospital. I just really didn’t want to keep doing this at that point. I managed to get myself together by the time I got back to Northwestern Memorial Hospital for my appointment with the study physician. Since I had time, I picked up a copy of my MRI (it is actually pretty stable...more on that later). 

Now for the super embarrassing part. As soon as Dr. Burt (the study doctor) walked in the exam room, I burst into tears again. Even as I write this I’m getting teary-eyed. Ugh. It’s like I broke a valve or something and now I can’t stop! Ok, back to my appointment. He understood my feelings (or at least seemed like he did) and the nurse was also extremely sweet and understanding. He even said that this is the reason he has nothing to do with the EDSS or deciding who is or isn’t in the study...he believes in what he does so much he wouldn’t be able to say no to people. I can’t imagine having his job. Knowing you can CURE something, but not have the ability to do it to everyone. 

The worst part of my number, especially since it was SO CLOSE, is that I feel EXACTLY the same as I did in December! By this logic, the damn number should be the same! I guess this is where the human factor comes in. Nothing’s perfect. Blah blah. I guess I would feel better about the fact that my MRI was still stable if I felt better. What’s the point of having no new or active lesions if I still stumble when I’m tired or get cramping pains in my leg or cant’ feel my hands at work half the time. It’s also bad when Dr. Burt asks me to walk a straight line (heel/toe) and says, “Did he (meaning the EDSS doctor) see you do that?” I know, lord help me if I ever get pulled over! I can hear my mother now telling me to “look at the bright side”, but I’m having an incredibly hard time doing that right now. Maybe I’ll get there, but I’m not there yet. 

 I’m not sure if Dr. Burt just felt bad for the crying idiot or what, but now the plan has changed a little. By the study protocol I shouldn’t have to go back to Chicago for another year now, but he is going to have me come back again in six months. I think he wants to give me another chance if in fact I still feel, or am, worse to get into the treatment part of the study. I’m tempted to lie next time I have my EDSS done. 

So for now I stay on Tysabri and try to get out of this little funk I’ve gotten myself into. Let’s just say, I’ve never been happier to be home and get a hug from Todd and Mason as I am today. 

Horseshoes and hand grenades

I'm really not in the best mood tonight. I was off by 1/2 a point to transfer into the treatment group. HALF A POINT! I'm actually not really in the mood to talk (or write) about it yet, so this story may have to wait until a later date.

Long story short, I'm coming back to Chicago in 6 months. I'm SO ready to be going home tomorrow morning. And I have a headache from all the crying I did earlier today.

Wee Bit Wednesday 7

{one} do you believe in ghosts? Yes. I have kind of a crazy story about this topic, but
I don't tell it to many people...


{two} are you more of a talker or more of a listener? I am an awesome listener...but I definitely like to talk, too. 
Depends on the situation I guess.


{three} would you rather get up early or sleep late? Sleep late! I am NOT a morning person, but between my job 
and Mason, it's very rare I get to sleep in any more.


{four} if you could instantly become an expert at one type of dance, what type would you choose? Ballet. I always wanted to be a ballerina when I was little.


{five} what's your favorite drink? Water. I know, it's pretty boring. As for "big girl" drinks, I'd
have to go with a manhattan.


{six} if your house caught fire and you could only grab three things, what would they be? Ok, assuming that the people in my home aren't counted as "things" (and I count
my dogs as people, too)...I would get my car out of my garage, my 
glasses, and my teddy bear, Roni, from when I was a kid.


{seven} if you could only visit one restaurant for the next five years, which would it be? Wow, this is a hard one. I'm always a fan of La Cabana, but I've
also really been into Crush lately. 


{eight} who inspires you the most? Mason. As cheesy as it sounds, seeing the world through the
eyes of a 2 1/2 year old is so amazing. He inspires
me to be more creative and optimistic every day.

{nine} if you had your own talk show, who would your first three guests be? Anderson Cooper, Johnny Depp, and Zach Braff. 


{ten} sneakers or sandals? Is there a third option? Yikes. I don't live in a place
that you get to wear sandals very often...and I only wear sneakers
when doing something physical that requires them. 

Melting

This about sums up how I'm feeling today in this crazy heat. So much for my plans of shopping and going to the driving range and more shopping...it's too freaking hot and humid to do much of anything!

Oh, what a world. What a world. 

Hot Time in the Old Town

Holy hell is it hot in Chicago! Apparently, summer decided to greet me on my trip this week. Talking to people today, this crazy weather just started...and boy is it hot! Today was in the mid-90s (96 degrees was the hottest I saw) and I saw that tomorrow is supposed to be over 100!

I don't see myself getting out much on this trip. This kind of heat, coupled with the super high humidity, really aggravates my MS symptoms. I have to go downtown tomorrow for my lab work and MRI, so hopefully there will be enough shops around with AC that I can duck into to cool off. I did head down the street tonight and got my mani-pedi done. On my way back I picked up some dinner at Noodles & Company and brought it back to the room. YUM!

Talked to Todd and Mason for a little bit. They are doing the "how many sleeps" countdown for Mama to come home. Only 3 to go! Last night Mason had to spend the night with Nana and Papa, and he slept in the "big bed" for the first time. He has always slept in his pack and play over there, but now we put a side rail on the bed in the spare bedroom for him. My mom said he did great, and sent me some cute pics this morning of my happy boy waking up.

Lincoln Park After Dark

I'm back in Chicago for my one year follow up. I'm really trying to not make a big deal out of this trip, but in reality, it is a pretty big deal to me. In December when I was here for my 6 month testing, my EDSS was up to 4...which means that if it is still a 4 on this trip, I can transfer over into the treatment group. Needless to say, being in the treatment group is what I ultimately want. I just remember how disappointed I was last year when I found out I was in the control group, so I'm trying not to get my hope up again and make a big deal out of this trip.

I'm only here until Thursday morning when I have to take that incredibly long flight back home. No real plans aside from my testing tomorrow and doctors appointments on Wednesday, but I'm staying in Lincoln Park again so there is definitely no lack of fun things to see and do. I love this neighborhood, and it's still so close to downtown where all my appointments are. One thing I have to do before Wednesday is get my nails painted...and because I'm so terrible at DIY manicure, I will definitely be heading out to a nearby nail salon. Hopefully they'll have my favorite nail color by OPI...Lincoln Park After Dark!

P.S. I really do have to have my nails covered for my appointment with the neurologist on Wednesday. He is the only one who doesn't know which group I'm in, and since chemo patients get a line on their nails and lose their hair, I have to cover them both when I go see him.

Wee Bit Wednesday 6

Six weeks in a row now. I'm actually keeping this up better than I thought I would.





{one} if you won a trip to Disneyland/world, who would you take with you?Todd and Mason, of course. I would also take my brother, Sarah, and Landon. And my parents to help out!
{two} when was the last time you listened to a CD?Other and Mason's sing-a-long kid music CD, whichhas (luckily) been a couple of months since welistened to...it's probably been over a year. I alwaysuse my iPod or my iPhone now.
{three} what spice/seasoning is your favorite?Does garlic count? I LOVE garlic!!! I alsoreally love cilantro. 
{four} if you were in a band, what kind of music would you play?Probably some kind of folksy, indie music. Or maybe country-type music. Like Miranda Lambert. 
{five} if you could have personally witnessed one historical event, which one would it be?I should probably say the first x-ray or something medical related. But I would rather have witnessed any of Robert Kennedy's speeches. 
{six} if you could go back to school, what would you study?I would actually really like to get my Masters degree someday. Probablyin either education or health care administration.
{seven} if you could go to one sporting event, all expenses paid, which one would you see?This one's easy. The Super Bowl. 
{eight} do you drive an automatic or a manual?Automatic.
{nine} are you comfortable speaking in front of people?No. I HATE speaking in front of people. 
{ten} have you ever experienced an earthquake?Yes. Many. It's just a fact of life in Alaska.