Sunday, May 24, 2015


My Lungs Getting a Workout:

Since it's been over a week since my last post, let me give you a quick update before I get to the main topic of this morning's post. Okay, so my diet is working. I'm still sad I forever have to say goodbye to sooo many amazing foods. BUT, I'm sooo happy. I'm having barely any (almost zero) issues anymore. Whew. Dear Pancreas why did you have to go and fail on me? But I guess it's really good that it's working. I'm getting out and learning the real estate market in the area and prepping for my state exam, which I'm taking on Andrew's day off next week :-) As you may have read on my Facebook or twitter page... had some car issues so I didn't make it to the Doc's on Wed.

We gotta take Andrew's car in and get some $400 thing fixed, because it's unsafe to drive. Waiting for his next day off to do that. So in the meantime he's been using my car, which is a little problematic for this week. LOL. But, soon his car will be fixed again. So another problem solved. Which means I can get back to the Trial I'm doing for Doc's research team on Wed! I go into the office 1 x a week for 4 weeks in a row. Then its over!

Which is perfect timing for the CF Walk and with my wedding coming up.  I'm trying to stay healthy and get my lungs in tip top shape before the wedding. I really want to be at my healthiest for Andrew. We have so many goals and plans for our future, I want to make sure I'm around (and preferably not on oxygen) for all of them. :-)

One way that really helps, and that Doc really harps about it is... yep, exercise. At one point in my life I was walk/jogging almost 4 nights a week and was around 60% lung function. I did a 5K that fall in 47 minutes. I loved that part of my life, I loved having muscle, energy, and better lung function. In the last 2 years my arthritis has gotten worse (my hips pop out a lot), my feet swell a lot and my joints tend to have more big flare ups.

Doc said I should try biking, but I'm not quite ready to give up on walk/jogging. It may be hard and I may be sore afterwards, but so far I still think its worth it. Of course, I haven't tried jogging yet, so i don't know how that will turn out. But all I can do is try. As you know Andrew and I have been trying to go to the gym to lift weights, sadly we have been slacking and prolly only go once every 2 weeks.

Pic: My Uncle & I 

But I took a huge step on Saturday (yesterday) and did a 5K! Well, not all of it. I did 3/4 's of it though. I made it between the 1 & 2 mile mark before I turned around. I was pretty proud. I walked lil over 2 miles in
51 minutes. It's a starting point and that makes me happy. I was a lil tired, but after an hour nap, I was fine the rest of the day. My legs were only a tad sore, so YAY!

I need reasons to want to 5Ks, and this my amazing uncles invited me to, so of course I wanted to spend time with them. Plus, the walk was for a good cause, Colon Cancer. My uncle has been Cancer free for a year and half since his surgery to remove the tumor! YAY! I think that's a great reason to do the walk!

I'm also doing a 5K in Walnut, IL for ALS (with some family & friends) in honor of my friend Sean, who I met in Dec 2011. We both volunteered at a non-profit that grants dreams to chronically ill kids. We started talking and got to be friends in a short time period. I did an ALS walk in 2013 with him, but shortly after he moved out west. However, I've decided even though he lives far away, I can still help & make a difference. ALS is absolutely horrible. Yet, he has an upbeat personality and you usually can catch him with a smile on his face. He is one of the toughest & kindest people I know. I can't wait to gather some family & friends and do the 5K in his honor! :-) Hugs, to ya Sean!

I think if I keep signing up for 5k's with causes close to my heart (I should be motivated enough to stay active). Well, at least until my joints can't physically keep up with me. And now that its summer, Andrew actually has a day off every week. So we can go work out, plus, he got a new bike a while ago, so we can go on bike rides a lot. I prefer to walk around the neighborhood or down by the lake, but he loves biking.

My dad and him really need to do the CF Cycle next year ( My dad does bike-a-thon thing in my hometown every year). Andrew also wants to do the extreme hike for CF sometime. So it's good Andrew is pretty motivated, which will help me.

I will be blogging after my appointment Wed to further discuss the research trial. Please, keep your fingers crossed my weight isn't down. I look skinnier & feel like I've lost a lot since I started the GI diet. It's really hard not eating anything with high calories. (so positive vibes please)

Saturday, May 16, 2015

Big Week...

Lots going on medically:

This week has been a big week! For example, did you know: this weekend is "National Walk Weekend" and there are over 150 Cystic Fibrosis (Great Strides) events (walks) taking place across the country just
during this weekend! How awesome! Make sure not miss out on Princeton's Walk today as part of my team (Team CF2) here!

 But wait there's more exciting news!...

The FDA advisory board recommended approval of Orkambi (a drug that targets an underlying defect for mutations DDF508). It was named Orkambi just recently, it is a combo drug of Lumacafter & ivacaftor. Side note: Ivacaftor is also know as Kalydeco (which was another drug that targets the faulty gene & its protein product, CFTR. This was for people with the mutation G551D ). Kalydeco & Orkambi are two drugs to actually target the defect, which means we are heading in the right direction.

Side note: this is not a cure, actually the 2 drugs haven shown to help lessen the amount of hospitalizations & increase lung function 2-4% ish on average. Having 2-4% back would be amazing & getting sick would really help with my daily life & quality of life. Here is the press release for the new drug's completed Phase 2 results!

Also, to see the amazing night we met Lewis Black click here!

Plus, the biggest difference in my life right now is GI & arthritis problems. As you know my GI problems were keeping me from work, I saw a specialist, and have a new diet. As I explained on my CF Facebook page, basically my pancreas isn't working enough even with the aid of my enzymes. Which I'm already on the highest dose. So I'm on an "Easy to Digest" diet.

No Nos: protein (beef, ham, fatty meats). High Fiber foods/ multi-grains, broccoli, beans, dairy (boohoo goodbye cheese), butter, hot spices, caffeine, grease or any fried foods.
I can have: White bread, pasta, rice, cooked veggies, any fruit, seafood, lean turkey or plain baked chicken.

It's been really tough, especially when eating out! BUT, it's working and I feel like I'm a normal person now.
Thankfully, my mom and Andrew have come up with great recipes and solutions. Like these Seafood pasta, and turkey/sweet potato meatballs.  AMAZING!

I really miss my steak, ham, meat sauce, cheese, cream sauce, and butter.... BUT, its sooo worth it. I can actually go back to work.

The only problem with my working or working-out for that matter, is the arthritis problems I'm having. I'm developing like bone spurs or something. My fingers are getting super knobby looking in the joints (and its hard to take my engagement ring on & off). Plus, the bottoms of heels hurt, especially my left. I think its a heel spur. I can't walk very long without it killing me. I've noticed my hips pop out of place more often and in general things like staircases are not pleasant.

But, even with Arthritis kicking my butt, I'm excited to go back to work now that my GI problems are figured out!

Speaking of which...Guess who is all set to take her real estate test!!! Me! So hopefully I'll be selling real estate working for the agency I want in less than 2 weeks!!! Exciting. Whew a lot going on. Plus this weekend I got to spend the weekend with my family, catching up with a few friends (even one from out-of-state) and another best friend's baby shower tomorrow!

And this Wednesday I start a new clinical trial! LOVE doing clinical trials! :-) Keep everyone posted!