Tuesday, August 5, 2014

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

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!

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