Thursday, August 21, 2014

Shake, Shake, Shake


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 control my own treatments. And that's another little bonus to new vest! It's programmable! I can tell it to work at any frequency and pressure for any length of time. I have mine go 10 minutes at three levels and get more intense as it goes along.

This Vest isn't new to the market, but it is new to me. I love it. My old vest wasn't programmable and automatically didn't stop after the program is done. It had turn knobs I could change manually (and a timer that didn't work). I'd have to keep track of the amount of time. It was soo frustrating. Plus, I was limited to doing my vest in the same spot every day. Now I can take it to the computer, tv, anywhere! LOVE IT!

What I didn't love was sending the old broken one back. Yes, I wanted to get rid of it. But It weighs 45 lbs and I had to put these inserts on both sides. Then lift it up high enough to put in the box they sent.. I was like are you kidding me?!!! Luckily, I have Andrew. He did it for me. But, seriously how was I suppose to do that on my own? I mean it practically weighs half of what I do. Let's just say... That would not of happened if I didn't have someone to help.

I'm hoping between my new vest and the clinical trial I'm on, I'll see a jump or improvement in my lung function numbers! My next appointment is Sept 4th! And I'm pretty excited!

What else is new?  Well, not a lot. I still can't work. My stomach still has a hole in it, which is taking forever to heal. So I've been focusing on my patio garden and getting some wall hangings done!

My pole beans are growing up the bamboo poles pretty fast, my chives and basil are thriving like crazy too! But I'm most excited about the tomatoes! They look great, I can't wait for them to be completely ripen. Look at em!  I'm sooo proud. I have never considered myself to have a green thumb, but I'm actually doing okay at it. Not bad for my first attempt!

My other lil hobby keeping me busy is painting. I've been trying to get some art work up on the walls, so the place isn't so bare! Here is the one I did for the living room. I knew I wanted something modern with lots of color! I needed it combine the colors of the kitchen (mostly orange)with the colors in the living room (dark green & blue). I pretty happy with the way it turned out!

We'll see what happens on my Sept 4th at my next clinical trial and clinic appointment! And hopefully this stomach tube hole will heal up soon. I'd love to get back to work or doing anything really. It feel like Tic-Toc-Tic-Toc...  I'll keep you updated!

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!

Tuesday, August 5, 2014

Deep in Thought

Thinking About Everything:

A lot has happened in the last week. Moving from a Chicago Suburb to Dekalb 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

However, working out and my job will have to wait. I'm still healing a month and a half later after getting my stomach tube removed. It is healing, just very slowly. It was doing really well, then I carried boxes, moved, and let's face it whatever had healed shut, must of come open again... It's leaking again. So I'm trying to be careful with what I eat and take it easy for a while (to make sure it fully heals). It will be worth it in the long run!

I can't wait to get back to work. I was gonna go back and take classes this fall, but I'm holding off until spring. Hopefully I can get this stomach healed up and put the weight back on ( I've dropped from 109 to 101 lbs- due to leaking and not being able to eat/drink a lot). Once I get my weight on, lungs in tip-top shape (read the next post below to hear some good news!).

I think the news about my lungs last week has me fiiled with hope for the future. Hopeful that my lung function will continue to increase, hopeful that these clinical trials I've been doing are really proving beneficial to our health, and hopeful with continued fundraising efforts that clinical trials & new drugs found will continue to improve our health & increase our life expectancy! I do believe life expectany is just a number, and doesn't mean too much... BUT, it helps put it into perspective to others who don't see the implications CF has on our lives.  Therefore, I'd like to take this time to thank everyone again for their fundriaising efforts at this past CF walk!( Read about the Cf Walk results right here!) I'm also doing a CF Walk in October in Peoria and the CF Climb in Chicago this November 9th! The minimum I need to raise for the Climb is $200, but Andrew needs to raise $200 as well. Our goal is to raise $1,000 between (Andrew, my friend Ryan -who is doing it too, and I). I'll be registering in the next month and posting the link up!

Why am I so pushy for donations and try to fundraise like crazy...?? Well, how many commercials a day do you see that ask for dopnations for organizations. Do you ever really call or send money, I'm not gonna lie, I usually don't. I don't, becuase almost all my efforts are directed to Cystic Fibrosis Fundraisers. I also help out with Amyotrophic Lateral Sclerosis, what's that you ask? ( Read about my Friend Sean, who has ALS, in this guestblog I wrote here). So basically we help out the organizations that either impact us, our loved ones, or issues that are passionate to us. It's tough to fundraise, spread awareness, and get others involved. However, my family, friends, and community have shown tremendous support. You all have fundraised, donated, shared my blog or news, Joined us one way or another to help fight CF. So even if my "pushing" only gets one more person's attetion. That 1 person could make a difference, I had people I didn't even know very well donate large amounts to the walk.  A little help and a lot can be done. (to read more about my getting involved in clinical trials & fighting CF read this blog post!)

I'm not really passionate about this just for me. I have lost lots of childhood friends (Casey, Andrea, Danny, Kevin) to this disease. And currently watch as one of my best friends has been fighting to get
approved for new lungs.Its hard to believe after fighting all day a team could deny you lungs. But she is fighting and I'm everyday amazed by her!
Read about Laura's Fight & Journey : (by clicking here & scrolling to the bottom/ 1st entry about Larua's Fight, then work your way up through the 6 entries until you come back to this one)

Also, I have another friend Alyssa who is has been in the hospital (pretty much non-stop) for the last 6 - 9 months fighting rejection from the new lungs she received a year ago. Two days ago she was told she has been denied for a 2nd pair new lungs, because she is too ill for transplant. I can't imagine what these girls are thinking right now. I know it is unfair to have to live every day fighting, keeping an upbeat attitude, and being hopeful for the future; yet never know what the future holds.

However, with new drugs and clinical trials we can find meds that prolong the health of our lungs and make our lives not only longer, but a little eaiser as well. I hope for a future where a CF patient doesn't have to go through a lung transplant at the age of 11, a 29 year old doesn't spend over 80% of the year in the hospital fighting to breathe on oxygen & a respirator, & where a 33 year old doesn't have to be evaluated & denied for lungs just a few months of getting married. All these things have happened to friends of mine with CF. It's a tough life. But it is worth fighting, fighting every little bit we can.

And the way I fight is I stay as healthy as possible and fundraise and spread awareness as much as possible. It is the only thing I can do to help, because as a fellow person with CF, I feel helpless. We can't visit our CF friends when they are sick, we can't give them a hug to make them feel better. We can use technology to help us stay connected, but it always feels like its not enough, when a friend is struggling. All I can do is fight for them. And that's what I will keep doing.

So thank you to everyone who reads this blog and joins us in our fight against Cystic Fibrosis!