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Showing posts from August, 2014

Ice Bucket Challenges?

It's For a Great Cause Though! I'm not a big fan of swimming, being in the rain, or anything where I get cold. But below I have posted my video of my Ice Water Challenge for ALS. Why am I doing this? A couple reasons, Mainly I have a dear friend with PLS (like ALS). I met Sean a few years ago at a Dream Factory Party. Side Note: The Dream Factory is like Make-A-Wish. I recieved a dream in 1995 (a computer) at the age of 10 from the Dream Factory (based out of Peoria) and then in 2011 I decided to join the organization and volunteer. I mostly did work with social media and designed the website. However, I did get to grant one wish! I took a lil boy on a shopping spree at Best Buy for gaming and computer stuff! I met Sean at one of the Dream Factory functions. Pic Right: Sean and I at an ALS Walk in 2012!   Sean was also a volunteer/ dream granter. And the two of us kinda just understood each other. Wanting to give to others with hardships( medically) in their life. I ...

Shake, Shake, Shake

Shaking: I'm happy to announce I've started shaking again! That's right, my big ol' clunky vest that broke down a while ago is going away. I got my new vest delivered! I love it. It is quite a bit smaller and I can actually pick it up and move it! Check out the difference in size on the right side! The old one on the right and new one on the left! It came with a rolling duffel bag it can be kept in or travel with it. YAY! That's the best news. Since I live a couple hours away from my parents, I do tend to visit them at least once a month and I stay for at least a few days. When I had my old vest, it was obviously too big for me to take with me. So I'd go those days just using an acapella (which really isn't very effective for me). It may work for some, but I have found only manual CPT and the Vest work. My mom or sister will pound me if I ask (feel like I need it). But now I can just bring my vest with and be totally independent! I love being able to c...

Bored or Busy- Big Updates!

Am I Bored or Am I Busy? Okay, it's been over a week since my last blog entry, sorry. Moving on August 1st, unpacking, getting settled, and focusing on the changes. So many big news, changes, and lots to work on lately. So I'm going to take this time to tell you about the 5 big areas of my life right now! So you can understand exactly where I am and get a good update! Here are the 5 Areas: Healing, Settling in, Clinical Trials, Friend Follow-ups, Blog/CF2 1. Healing I had my stomach tube taken out On June 20th! It was so exciting, but a little nerve racking how it happened! (read about my Journey with my G-Tube:  Here  and then read how it was taken Here too! ) I'm very glad to have it out, don't get me wrong...But, it's been a long road healing. It's still not healed. It still leaks, so I have to careful with what I eat. Anything acidic burns and anything with too much liquid just comes out the hole. So I have to always have gauze over it. I went back ...

Deep in Thought

Thinking About Everything: A lot has happened in the last week. Moving from Chicago area to a more western suburb area was interesting to say the least. The U-Haul reservation went from 9am-8am to 5pm-6:30am... Which means we'd be moving in the evening, in the dark, and luckily the rain held off for the most part. Dropping the UHaul off at 6am the next morning, after being up til Midnight getting moved in...well that wasn't too fun. But it is done and  I love the new apartment! It's 2 bedroom/ 2 bath, with a Fireplace & patio, and there is a gym & pool. Best part is how many cabinets we have... I can get all my meds, nebulizers, and other med stuff in them! I'm hoping since I will have access to a gym, pool, walking/biking path that I will be able to  find a lot more time to work out. I really need to get some more muscle, I'm kinda a weakling. haha. Here is a sneak peak of the kitchen... to see the whole apt, guess you'll just have to visit :-P H...