Wednesday, August 13, 2014

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 in for a post consultation after a month. The surgeon said it isn't infected and that it will take a long time. I had it in me for 15 years, since 1997. That's semi-permanent, so my body will take a while to heal it up. He told me it could take months. And now mid August almost 2 months later since it came's about half way healed up. It doesn't leak nearly as often or as musch liquid. I only have to change gauze twice a day (to keep it clean). No more, needing new qauzes constantly due to it leaking through the previous gauze. So that's definetly good and my healing is headed in the right way. I've noticed though, the more intense coughing or a lot of moving around causes it to leak more. The movement probably breaks open the wound, and undoing all the healing it had already accomplished. Since moving I haven't started a new job yet,but I was unpacking a lot. This caused it to leak more, however in the last week I stayed at home mostly and it made a big difference. The actual size of the hole has decreased by quite a bit! I've been applying antibiotic oinment twice a day with the gauze changes too, which helps a lot. I'm hoping in one month it will be all healed.

What does that means for me?

2. Settling In/School 

   Yep, the big move was on August 1st. Why move? Well, bottom line. Andrew was tranfserring to go to NIU. I was in a Graduate Program at Dominican Univeristy, but ended up sick and in & out of the hospital.  So I had to withdrawal and the process was a huge headache. I've had to withdraw from college semesters three times over my college life. It took me a total of 6.5 years to get my Bachelors Degree. But this included, losing 2 years (withdrawing from semesters when needed) due to hospitalizations and surgeries. Overall, I withdrew from a semester at Eastern University (then returned home to go to a community college, after a traumatic medical experience), 2 semesters from the University of Illinois (where I transferred to), and then this Fall 2013 at Dominican University my first semester in Graduate School. And both Eastern and U of I were very understanding and quickly helped me through the process. However, Dominican took over 6 months to get the papers filled and return my tuition. This was with me calling, emailing, and eventually going
onto campus more than once to light a fire under their butts. Also, we found some problems with the program (they kept adding classes and pushing back the graduation date). So I decided to not return and now I'm still trying to figure out what to do. I could attend NIU next year, but they don't have my exact program. However, I still moved to Sycamore, IL. Andrew was gonna go to NIU. I followed him up to Chicago last fall when he decided to go to Dominican. I applied and went there too. It wasn't a hard decsion and I honestly never thought twice about it. I have never moved for a guy, but I couldn't imagine being sooo far away. I had a lot of medical challenges and 4 hospitalizations/surgery (included) last year. Andrew was there for everything. But after all the problems with Dominican University, we discussed it and thought Andrew would be better off at NIU (he'd graduate faster, same degree, and save over $30,000 in loans). So I decided moving to the Sycamore Area (8 miles north of Dekalb), find a job or go to school, would be a great idea. It has a small town feel, I love the community! I hated Chicago traffic and Andrew was always commuting and driving before. In this area, we see each other a lot more and have more time together! I love it! But now I just have to figure out if I want to go back to school or what type of job I want (once I'm healed). I have about a month of being unemployed while I heal, but this will give me time to figure things out.

And yes, it can be sooooo boring everyday. But...

3. Clinical Trials

I have clinical tirals going on still. I was in one trial from November 2013 -June 2014. It was an easy trial, I just had to continue to do the same nebulizers I normally do. I kept a diary and went in for appointments once a month. As soon as that trial ended I started this tiral. It started end of July and runs through  November.
 I go into the office every 3 weeks for a 2 hour IV treatment. I'm more excited about this trial, because its a new drug. I hope I'm getting the actual drug instead of placebo. Driving 1.5 hours one way to Docs for the trial is something I don't mind doing. It helps with research, I get some financial compensation for the time and gas money. Its more difficult taking off 1-2 days per month for doc visits. So now that I'm on medical leave til I heal its a little easier and the trials gives me something else to focus on. To read all about the Trials I have done: click here! And doc mentioned a 3rd trial he wants me to consider starting once this one ends and it sounds exciting as well!

and there is more keeping me busy while healing up...

4. Friends 

Well, Mostly I've been trying to keep updated with all the big events my friends are doing. Some weddings coming up, 2 CF friends have been struggling and have been denied for lung transplants ( read about it here!). Before moving we had no time to visit people or have people over even. Since moving it has been a lot better. I don't know a lot of people in the area. It is hard for me to be social so far away from my family and friends. But this is closer than before, only a lil over an hour to my hometown. Plus, only half hour from a cousin and 45 mins from 2 really good friends. Since moving I've already had some visitors. My uncles came to visit (love them), so much fun! Here are Andrew, my uncles, and I playing Headband! And I found out two friends of Andrew and I's are in Dekalb a lot for NIU classes. I got to have lunch and hang out with them the other day (while Andrew was at work). We went to his work for lunch and he got to take his 15 minute break while we were there!  Then this weekend another friend of mine is coming to visit and I'm visiting my cousin Friday night. I think this is more socialization in the last two weeks then what I've had all together in the last 9 months living in Bensenville. Hopefully, this will continue to get better and I will see more people. That's what I miss the most. Being social, its a huge part of my life and without it I feel lonely. So thankful it has gotten better! I hope it continues!

5. Blog & CF Events

This is the other part that keeps me busy while I'm not working. I've updated my blog. Included pages describing TEAM CF2 and what events we do around the state. Our next two our the CF Walk in Peoria Oct 4th and the CF Climb November 9th. And that will be it for the year. I've been following up since our CF Walk we started in Princeton and my goal is to make that an official Great Strides Walk Site!!! I've updated the Facebook page for our supporters. Got new pictures put up and have been posting all the blog entries on there.

I'm attempting to seperate some of the CF events and blog posts from my own personal facebook wall and posting them on the support page: So if you are reading this blog and want to follow along with future posts, then feel free to "like" our page!  Either click this link: and "like" us our page directly or click "like" on the right hand side in the facebook box!This page is for anyone who wants to read about, get involved, or just understand what we are fighting for! CURE CF!

Pretty much that sums up my life right now. I'm just healing, figuring out what to do, and trying to keep busy with other projects until I'm healed all up!

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