Monday, May 30, 2016

Big Decisions

Change is Always Difficult:

Lots has been happening lately and some big decisions need to be made soon.  But first I will share some great news! Last week we hosted a fundraiser at a local restaurant, where we were guest-servers for the night. We had a door prize and a few raffles, and raised an amazing $2,120 that night! Thank you to everyone that helped us. Our servers, volunteers, customers, and the Right Spice for letting us serve there! The total for the event goes to the Princeton Great Strides Walk and all goes to the CF Foundation.

After the night, we all sat down and enjoyed a nice dinner to relax and celebrate! It was a lot of fun and I can't wait to do it again next year! I'm hoping to do one more fundrasier in the fall to supplement the Princeton Walk. A lot people don't realize we can fundraise all year round, that the site is up until the end of December.

Also, I have two contracts in escrow right now, but the BIG thing on my mind is: CF Clinic. I'm mainly nervous, because I'm going to a new clinic. Well, not completely new. I grew up going to this Clinic until I has 26 years old. I loved my clinic and loved my CF Pediatrician.  Doctor C was always there for me. But, when we lived up in Chicago area it was really convenient to switch to Doc B. Especially since Doc C was retired.  There are pros to both centers. Doc B in Chicago is so on top of research and creative ways to treat me. Which is needed, since I'm allergic to so many antibiotics, etc. But, I realized after the month of April, we just couldn't do it anymore.

The month of April I was in the hospital for 8 days and at home on IVs for another 8. Driving 4 hours one way to the Doctors every other month was hard enough. But when you are sick, it's hard driving yourself 4 hour to the doctor's. Otherwise Andrew has to take off work. Plus we pack my meds and food, not to mention the cost for gas. My hospital is 3.5 hours from our house too. So when I was admitted Andrew only got to spend one night with me there and he didn't get to see me the other 6 days. My sister came up for a night and my parents drove up to take me home. It was just soooo far from everyone. But, the icing on the cake was when my mediport wasn't working and if they couldn't fix it I would of needed surgery to replace it. I was sick enough for them to cancel an eye surgery that week and admit me, so I did not want to be alone if I needed surgery. If I was going to the CF center in the town where we live now, my hospital is 20 minutes from our house and less than an hour from most of my family.

It made me realize that too many crazy things happen with CF and that I cannot afford to have all my family so far away when I'm in the hospital. Andrew and I talked about it a long time, but ultimately he said it was my choice. While I do think Doc B is the bomb, I just can't keep up with the distance, too much happens. Why drive 8 hours and sit in a clinic for 2, when there is a great clinic and research center 20 minutes from our house? The doctors at our local clinic are new and I have heard great things. Plus, the rest of the staff is all the same and I LOVED  each and every one of them. In fact, I really missed them and cried when I left them. I'm excited to see them all again. And while, I'm excited to have my CF doctor, hospital, and research center all in the town I live, I'm still beyond nervous.  I really loved it at Doc B's too, but I can't keep up with it.

We moved to Central Illinois and away from Chicago in August, but so far I had been lucky. This last hospital stay made me realize how far apart from Andrew I would be every time I'm sick. But the thing that really drives this decision, is thinking about how it impacts my future kids. Andrew and I both want a family, and do I want my kids growing up driving all the way to chicago for Doctor's all the time, or being 4 hours away from their mom for weeks at a time while I'm in the hospital. No, I don't.  If I was hospitalized in Peoria, my kids could just come up every evening and see me.

I'm not sure how tomorrow will go and I'm very nervous. It's been 5 years since I have been at the local CF Clinic. It's a huge decision to switch care centers and doctors, so I'm hoping I make the right decision.

I'm also nervous to figure out what is going on with my bottom right rib. It has hurt for the last 3 weeks. The rib feels bruised, it hurts when I touch it or cough. It's not my lungs, It doesn't hurt when I breathe in deep and I'm not sick. So, I'm thinking the bottom rib must be bruised or something. Hoping to get some answers about that... Keep you all posted tomorrow. Fingers the transition goes smoothly and I have made the right decision.




Tuesday, May 17, 2016

Eyes of My Blog

Wow, Mind Blowing!



Wow, I looked at my Blog and my Blog's Facebook Awareness Page and couldn't believe my eyes! My blog has over 130,000 views on it and the Facebook page is close to 500 likes! I just can't believe this many people are following my story & the CF Community's Mission to Cure CF!

It's great to see so many people want to learn and get involved. I've met people on twitter and social media platforms I have never met in real life (and who I may add have no personal connection to CF, but still donate & even attend Great Strides Walks where they live). It's unbelievable the love and support people can give! I'm just so happy and never could of imagined this when I wrote my first blog post...

And in honor of that let's take a happy trip down memory lane, seeing big events that have been recorded in the blog, including some of my best posts! Also, it's interesting to see how much CF has affected my life just in these past 4 years...

(There are ton of links, so feel free to read any that interest you and skip over others. I just want to show everyone how much CF affects my life, by looking at it from the eyes of my blog.)

And to think it started with this my 1st post (which hahaha, you can tell I'm new at blogging) But, HERE it is all the same:  First Blog post, Hello! in Feb 2012

Then to think a few months after I started blogging I shared some advice/experience sharing about CF and being in a Relationship...The funny part is this post is from June 2012, just 2 months before I met Andrew...I decided to add a link at the bottom of that post, linking to Andrew & I's perspective on Dating & CF (which are great reads)!!!


October 2012, My blog shared about my 1st Great Strides Walk with a TEAM!!!! This is wear my Great Strides effort really began!

Then in March of 2013, I had a crazy virus: Missed Play, 3 hospitals, and 6 mouth swabs later..."

Triple Hernia Surgery... I'm prone to hernias due to all my coughing. In June 2013 my surgeon fixed 3 at the same time. Plus, we wallked at Hollowayville, IL.

I celebrated  my 150th blog post in September 2013 with sharing about The Importance of Online Peer Support in the CF Community - Also jog/walked my 1st and only 5K I have ever done that month! Whew, that was really tough. Gosh it shows my dedication and how Laura motivated me.

I started graduate school and moved to Chicago in August, but was admitted twice to the hospital that Fall semester, which left me with a hard decision about Graduate School and what my future will hold...In November 2013 I posted this update about my health, Laura's declining health, and my medical withdrawal from Graduate School. Realizing Graduate School and my social work career path wouldn't be compatible with my CF medical routine and problems. I also blogged this month about how I gain weight, including some high calorie recipes and tips, which has gotten tons of re-pins on Pinterest and the post alone has over 2,100 views, so people must like the tips.

By January of 2014, Laura was fighting for her life and needed new lungs. I posted this: Calling All Who Care! to plead for people to donate to Laura's cause and motivate her to stay healthy and push for those lungs.
Can we even afford our meds? a big topic I discussed in May 2014

After not using my G-tube for an extended period of time, in June of 2014 Doc let me get it removed! A Goodbye Gtube! BIG milestone of mine. I needed it for 17+ years of my life and was happy to say good bye to it!
Also, that month we held our FIRST CF Walk in Princeton, IL!!! Raising over $13,000 for the CF Foundation!!! Was so proud & what a huge moment for a small town!!!

All summer Laura had been in and out of hospitals and in Sepetmber 2014, I wrote the hardest blog post of my life. While it is a sad post, it THE MOST powerful post I have ever written. So please read it if you haven't. Here's 2 Girls on a Mission

In October of 2014, I had to have my stomach repaired, where the Gtube used to be: complications of having a Gtube removed after so many years...

Then in December 2014, two months after our 2 year dating anniversary, Andrew proposed!!!!


Wedding Planning from a hospital in Jan of 2015. Yep, I was admitted again. I did 2 weeks in the hospital, plus 3 more weeks at home on Ivs, plus steroids.. Plus, frustrating that I really needed the insurance to pay to fix my cayston machine & send me the med once it was fixed..

Fighting.... for months..and then in April of 2015 I got my lung function back up to 55% Whew. talk about work!  So here was the post called "My Happy Dance"

In June 2015 Princeton celebrated it's 2nd Annual CF walk (this year being an OFFICIAL Great Strides Walk) raising $23,000 for the CF Foundation!

We said "I do" and became husband and wife on August 16, 2015!  We also took big steps in our careers within two weeks of our wedding and moved! Andrew took a big promotion at a new opening HyVee Store and started actively working on getting my Real Estate License! BIG TIME, BIG CELEBRATIONS!

By November 2015, I started my career and wrote about Careers & CF here!

I started 2016 off sick and struggled lung function wise for awhile. I had more colon issues, at one point was practically living off ensure. In March 2016 I discussed how someone with CF was "Fragile yet Strong" .  Also in March...
I got the honor for being the Guest Speaker for the Local Cystic Fibrosis Foundation Branch's Award's Night. I even received an award "Outstanding Great Strides Partner 2015" Was beyond honored! Here is my blog post about that evening!

One Day at a Time. 8 days in the hospital and 8  more at home with IVs in April 2016
But finally by May 2016 (this year) I was feeling better. But it brings us to my current struggles and triumphs. One of last posts was about how I'm succeeding and failing at the same time. I need to continue to try harder!!!

This may have been a long post, with tons of links. BUT, I think it's an eye opener to how much CF controls my life. It gives me struggles, challenges, but with the work comes great rewards. Accomplishments make it worth it. Seeing CF get Cured in my lifetime is my BIGGEST dream. All the work, all the clinical trials, all the effort. I can't wait to see the greatest reward ever!!!

Please consider joining us at the Princeton Walk or donating to it: http://fightcf.cff.org/goto/CF2Princeton

THANK YOU!!!








Tuesday, May 10, 2016

Promises, Commitments, Challenges

Wowzer:

I feel my life has been so busy in the last month or so that I can barely keep up with my blog. I discussed some great news in my last post! I was really nervous with my decrease in lung function this year. I wasn't completely sure a hospital stay or 2-3 weeks of IV meds would help (even with steroids). In 2015, I struggled and barely saw an increase after the IVs. So deep down I am always nervous. I was beyond relieved that I'm closing the gap in numbers and increasing. I'd love to continue the climb.

So I have been pushing harder than ever. However, it's exhausting and I'm not completely succeeding at it. I have been keeping on top of the my meds. I have been doing all 3 sets of nebulizers, at least 2 (30 minute) vests. I've been walking a lot, because my  job has gotten quite a bit busier with it being warm out. I currently have 1 client house hunting, 1 working on getting approved, 1 contract in escrow, and a few other clients that are preparing to house hunt. Which isn't a ton compared to most Realtors, but add onto that GREAT STRIDES season, my volunteer work, CF meds and DANG!

I try to attend 5 walks a year (helping co-plan 2 of them), and coordinate all aspects of a 3rd (the Princeton Walk). I help out with a few other CF Foundation events throughout the spring too! I make sure my clients come first, but I honestly LOVE helping with the CF Foundation. Andrew and I have talked about balancing my work and volunteer work, along with my health. I told him my clients have to come first, but IF my Real Estate career ever gets in the way of my advocacy and volunteer work, I'd give up my career. I don't expect to make a big salary with my job. I focus on Real Estate from July - January. But in the spring it is Great Strides Season, so I don't actively seek out new clients in those months. I gladly accept them, but don't spend anything on advertising in those months. I'm in Real Estate because I love two things: People and Houses. Which I think is what is what Agents should focus on, not the paycheck.

My husband is completely on board with volunteering and understands how I have to balance both. I love that he supports me 100% in my CF advocacy. It can be hard to balance CF, Volunteering, and Work.

I've been super busy in the last 2 weeks, as I said I'm keeping up with meds. But, I am actually failing at the food and eating part. Here is what has been happening.. I'm so exhausted physically I sleep til 8am, shower, 1.5 hours of meds & vest, chug a 300 cal ensure, get work stuff gathered, etc. Then I head to show clients homes from 10-12pm. Then into the office, writing contracts, emailing, setting up other showings, searches, etc.. Then around 1 or 2 pm I have to head home to do my meds and vest again.. In the afternoons I shadow an agent, have a training class, or run errands (groceries, pharmacies, etc). Get back home at 4pm... In the evening I either walk with my sister, or have a Realtor event, or have cleaning, laundry etc. I also during this time am making phone calls, sending press releases, designing flyers, etc for the Princeton Walk & other CF events. I usually have to run back to the office to fax something, By the time I get home it's time for night meds...and 7pm when I realize the only thing I ate today was a 300 calories ensure and 70 calories worth of Gatorade. UGH

I've lost weight and I can tell. I'm probably around 101. I really need to get  back to 108 lbs. So many times I have to make a choice: do an hour of nebulizers or have time to make food and eat before I head out again.

But last week we celebrated Andrew's Birthday, so I did get my fair share of calories that night. Andrew had never been to a Hibachi grill, he always talks about it. So I decided to take him there for his birthday. YUM! I've been to a few and let's just say I never leave hungry! I got him a baseball themed cake (last year was minion themed). I hope he had a great birthday dinner, he deserves it! <3

What makes it worse is that I used to walk under 1000 steps a day. Now I'm averaging over 5000 on a workday... So I'm burning a ton more calories. Which is why I'm so exhausted at 10pm, I fall asleep before Andrew even gets home.

I need a better balance. I haven't found it yet and I'm struggling to find it. I love my job and my volunteer work. It's frustrating that if I didn't have the meds to do, I could eat and have no problems... That being said... I WILL continue to push myself. I want my lung function to increase, I want to be more active, I want to be healthier. I have a future to fight for and I will!