Monday, November 29, 2010

Lung Update

I am going to try and post every day this week, I know I have been MIA.  I had a check up last week and I wanted to update you all! My weight is stable - hooray for that! My lung function is down to 28% my oxygen is level is getting a little low, but not enough to need oxygen full time yet...So as usual things are steadily declining.  I am having crazy night sweats lately so we are trying to figure out what that is coming from.  They tested me for a few different viruses which all came back negative so now we need to try and figure out what else it might be.  Night sweats always scare me because they make me think of lymphoma but it seems pretty obvious it has to be coming from some sort of infection.  I'll keep you updated! Thanks for checking in :)

Wednesday, November 17, 2010


I'm still here :) I hope you guys are getting ready to eat lots of Turkey next week! I know I am!

Friday, November 12, 2010

Seven Years

My lungs are seven today!

Wednesday, November 10, 2010


I finally got to try the calgel glitter gel polish with Lindsey when we went to NYC and I loveeee it.  It's so glittery! I think I am going to attempt to do this home, and there will be a post about it of course.  But it is so thick and solid glitter it's great! It's not for everyone but if you like sparkly it's for you!

Tuesday, November 9, 2010

Lung Update

So we've finally had some movement in my lung function - I've been pretty stable at 33% for the past few months I think, or somewhere around there.  I was at the doctors last week with one of my bffs Lindsey (who comes with me a lot so I want to give her a little shout out!) and my lung function has dropped between 29% and 31% (they used two different machines but the worst would be used if they listed me.) That means that it makes sense that I feel a little crappier and I am slowly moving closer and closer to getting on the list.  We calculated what my score would be right now if I were listed and it was 39, and most people on the list are in the high 40's (the higher the number the closer to the top you are.)  In really good new my weight has stayed at 83 pounds for months now and I am working really hard to ensure I don't drop any or I know I will be strapped down and forced to get a feeding tube - this is something a foodie does not desire! This is the update, inching closer and closer to breathing again...

Monday, November 8, 2010


My foodie friend and I decided to try out Towne because everyone seems to be raving about it....It's in kind of a random location to me, but I bet it's good for the after work crowd.  And they have a really good spot for valet! When I walked in I wasn't really sure how to get to the dining room - it's super confusing - and I wandered around for a while and no one cared to ask me if I needed help, which annoyed me a lot I must say.  If you don't want to bother to ask it should probably be more clear how to get there.  Finally I asked someone and they directed me in the back to another bar and the dining area.  Both the bars were really packed.  Someone sat me and while I waited for Laura (this is shocking, she is always early, haha) they poured me some water in this interesting science beaker.   Warning: All of these pictures were taken with my IPhone in bad lighting.

I looked over the drink list and they had some really great sounding martinis, but seriously the mocktails made me salivate.  I got a drink that had orange juice, pineapple juice, coconut milk, and grenadine and it was AMAZING.  If I could have added some vodka to this it would have been the perfect mixed drink

They had a lot of starters and I really wanted to get the tare tare but I love risotto so I got the grape risotto with foie gras which I hate, but I wanted the risotto that badly.  I should have gotten the tare tare, there was nothing grape about this risotto besides 3 grapes on top of it.  Maybe the duck liver would have been amazing but for what I was looking for this was not worth it.

Laura got the pizza, which was photographed really badly, but it was really really good! I suggest the pizza!

For my entree I got the duck, which I expected to be sweeter because it was supposed to be covered in cane sugar, but it was really good.  It was no better than any other duck I've had at a good restaurant, but it was really good.  

Laura got the chicken, and I think she felt the same way, it was no better than any other chicken she's ever had, but it was good. 

The scene of the restaurant is really cool, it was really full by the time we got our entrees and the bar was beyond packed.  The wait staff was really great too.  If I went back it would probably be for some cocktails or mocktails and the pizza...

Monday, November 1, 2010

Potatoes Baked Twice

My aunt makes twice baked potatoes a lot and I really enjoy them.  I mean who doesn't love anything lathered in cheese? I made them yesterday because I figured that they must have a lot of calories right? Potatoes? Butter? Cheese? Milk? Basically all you do is baked the potatoes and remove them from the oven scoop out the middles into a bowl and make mashed potatoes, however you see fit, add a little shredded cheddar cheese, and fill the potatoes back up, and cover them with cheddar cheese and then bake again.  It's potatoey cheesey goodness.