Wednesday, February 10, 2016

Happy 4th Birthday Blog (Do you want to Blog?)!

Why Do I Blog?

I thought I'd share why I started blogging in honor of my blog's 4th year! There are lots of reasons why I blog. It started when I did Stand-Up Comedy on the BigTen Network. My Stand-Up comedy is all about my Cystic Fibrosis. If you want to watch a clip of it, it's here (I start about 10 minutes into it- this was my 2nd time ever doing stand up, I was NERVOUS! lol)!  It was pretty rewarding though being able to spread awareness via jokes on TV! Please, understand that I didn't make jokes directly about CF. Having CF itself, is not funny. However, CF can get you into some funny situations and we need to have a good outlook on life. Why be negative and sad all the time? PLUS, Why not share mine and raise awareness?!?! I graduated that semester from college (Fall 2010) and moved back to my hometown.

I felt like I wasn't doing enough for the CF Community. Nobody in my hometown, really had CF (those who did had already passed away), and our town didn't have any awareness events. My best friend (w/CF) Laura started to struggle more medically and she was pushing me to stay healthy and accountable for my meds (which I try my hardest). Laura and I would talk about certain topics (via phone) like how hard it was to have a disease where we can not go to support groups. We aren't supposed to be around others with CF, as we can spread superbugs. It was a tough time, I didn't have college or my social life to keep my mind off my CF anymore (in a good way). Therefore, I focused on it more (not obsessing, just being more proactive).

I realized those very topics we struggled with, probably a lot of other people were too. Around the end of 2011 (1 year post graduating), I started teaching myself web design & blogging, etc. So I decided why not test it out. On Feb 12th of 2012, I started my blog and that was the 1st year I started TEAM CF2 for Great Strides! Laura had introduced me to great strides in 2008 (last time we physically saw each other, before she grew some superbugs). We both started teams where we lived. I was so impressed with mine by the end of 2012! That gave me all the motivation I needed. I wanted to see how much bigger we could get and just HOW MUCH awareness we could spread! And today we are a National Great Strides Team, we have started our own Great Strides Walk in our small hometown, and its a big success! Thanks to the support of my team, we have raised (from our walks & teams)- over $40,000 since October 2012!   -talk about motivation!

Once I started blogging I found other motivation too, which kept me determined to keep blogging, such as:

1. Keeping me accountable with meds
2. Meeting other CF patients and family through the blog
3. Spreading awareness, especially about certain topics
4. I could get feedback on certain topics from others
5. Being able to share, helps with coping.

But, blogging can be difficult. It is a time commitment. So to those new bloggers out there, hang in there. I promise it will either get easier or you will decide it isn't for you. But, don't let it take over your family or daily life!

Some things you can struggle with and how I dealt with it:
1. is anyone reading this blog?- I added a counter on the upper right hand side and I check my stats weekly.
2. Is it interesting? - I base this off the stats & if I get comments
3. I have no idea what to talk about- Switch it up
4. I don't have time to blog- I do it during meds... see ----->(pic on right)
5. How do I get readers- Find a way to "promote or advertise" & use pictures! 

As you start, it is okay if you stumble. Heck, my first couple posts, were nothing amazing... Haha, check out my first post HERE- wow, a lot has changed!

Overall, my statistics on this (Blogger) platform tell me where my readers are from (country) and how many views I get. The way (I try) to make post's interesting, is just by being honest. I try not to just narrate how my day went, as that can be boring... Sometimes I will discuss my day & how CF affected it, health problems I'm having, or big topics like G-tubes, etc. I tend to blog once or twice a week during my meds. I usually try to take a few photos throughout the week that I can post. Did you know readers are WAY more likely to go into your post if you have a video or photo attached??? And the BIG blog question: How do you get readers: There lots of ways. I use social media for most of my "promoting." Every time I have a new blog post, I share it on Facebook, Twitter, and sometimes even on other websites!

I know in my last post I discussed all the GI problems that are back.. Well they have gotten a little better, and we are still trying to decide on the best course for me (new GI doc, etc). I'm scheduling my eye surgery on Feb 22nd too (so that will be at the beginning of march)! Gotta get everything figured out, Great Strides Season is approaching fast! Which I why I shared this post...

Last night we had a National Family Team Conference Call! We all discussed how we promote Great Strides and I realized my blog is my main source of advertising (along with social media)! 


How do you promote your CF events? Have an idea to help? Why do you blog?

I will be posting some tips & tricks for my walkers, as well as challenges and competitions!  I'm announcing a new giveaway as a celebration of my 4 years of blogging on my CF Facebook page! Make sure you like and keep your eyes open! And share your thoughts below. 

Thanks everyone! 




Sunday, February 7, 2016

Living off Ensure & Hating Food

Road Block: Hit an Obstacle:

 If you are new to my blog you may want to read about my past GI specialist appointments, colonoscopies, and weird diets they put me on HERE, since that has been my biggest obstacle to getting healthy.

Post Christmas and all through January I was doing really well! Weight up to 107.8 lbs, lung function even around 55% again- up from 36%. Finally working out and eating right! And then BAM! GI problems all over again. 

All of the issues are back. The diarrhea, bloating, but the worst is the intense stomach pains/cramps I get (that they say are my colon spasming).

I've been having these issues really bad off and on for a couple years, but got worse when I had my g-tube taken out. Not sure if that is related or they just kept escalating and it was a coincidence. But either way, it is interfering way too much. 

They tested for Celiacs and Crohns in the past, both negative. So the GI doc said it was my diet. So he told me "don't eat dairy, meat, fatty foods, or high fiber content, no raw veggies or fruit, etc.."  Mom went with me to the appointment, so the drive and day itself were pretty fun, but that diet wasn't....
(picture Mom at last appointment)

I lost weight, so Doc B called him and told him I need the protein & some fat. So then I added meat back in slowly, but kept no dairy and minimum raw veggies/fruit, no grease/fried foods. This has been my diet for the last 2 years.The issues never completely went away, but at least the painful cramps were gone. 

I don't really want another colonoscopy or to do a bunch of diets again. I also don't want to drive all the way to Schaumburg (3.5 hours one way) to see my GI doc. So I may try to talk Doc B into letting me get a local GI specialist. Normally, I'd just deal with it the problems, if they aren't too bad & what I consider minor.

But for the last week I have been eating 1 meal on average a day, and just drinking ensure to make up for the rest. My body digests ensure and I don't get as much stomach pain when I drink it, opposed to eating actual food. Food at this point sounds horrible. I'm always scared to eat. 

But who wants to live off ensure and I know I am losing weight? My calories intake has dropped 1,000 calories most days and some days I don't even feel like getting out of the bed and going to work some mornings, because my stomach hurts so bad. Sometimes after I eat I think I will throw up or the pain gets worse. After I eat even a small meal, I'm extremely full and nauseous. They I get the cramps & bathroom issues throughout the day.

I'm starting to hate food. I can't keep up with this, so now I HAVE to try to fix it again. Andrew and I even went to the movies not too long ago and I didn't want anything (not even popcorn). Food just sounds horrible to me now and we all know I LOVE food!

Tomorrow I will call my CF doc and see what he thinks I should do...Also, in 2 weeks I get to schedule my eye surgery! I just want to fix all these issues, so I can resume my goals in health! I just want to keep at my weight and lung function goal, so we can see our "family" goals come true!

Keep you all posted!

Sunday, January 31, 2016

Andrew and I's Next Step

Family Planning Part 2:

I already talked quite a lot about Andrew and I's reasoning for starting a family now and choosing Foster Care in this post here! But, we have a few steps we need to take before we can actually become Foster Parents. 

1. Move (hopefully buy a house)
2. Take the classes, etc.
3. Prepare our home for Children

Realistically we have our lease at our current apartment through August. So at the earliest these steps will not be finished until at LEAST September. If we find a house between now and then, get classes taken, etc then we will right on track. We aren't too concerned about the classes or paperwork yet, we want to get the new place and move first.

Why do we need to move before we have children?

Well, a few reasons. First being we want to foster more than one children, preferably foster-to-adopt siblings. I do know we need 1 bedroom per child and currently we have a 2 bedroom apartment. Secondly, this apartment with all the stairs and lack of garage is really tough on me (lung wise and particularly around winter). Thirdly, we have certain school districts and areas we want specifically want to live in (so that our children will go to certain schools). 

We had discussed starting a family a couple months ago, but then I got pretty sick and saw some really bad lung function numbers. Of course, I started questioning whether I was healthy enough to take care of kids and myself, plus work as a Realtor, etc.. But Andrew always calms me down. We decided I would focus on my health 100% and work really hard over Jan-Feb and see! Well, it paid off. As you read in my last post here, I'm at the top again. Which is practically a miracle.  So I will keep up with 10 nebs, 3 vests, 20 minute workouts, 3 meals, 2 snacks, calorie counting, and fitbit! Maybe I will continue to climb this year and I will be able to do things I havent in years (carry heavy object, laundry, or even jog for more than 2 feet). Andrew and my future family are keeping me focused!!!! Which means we can start the process and take the steps we need to become Foster Parents.

The part that may hold up the process is finding a place to live. We would rather buy than rent, but if August comes around and we haven't found a house, then will have to look for month- to-month rentals that are more conducive to what we need until we find a home. Again, since I'm a realtor, I'm hoping that we will find a house before then.

Here is my wishlist:

1. 3 bedroom ranch
2. Garage- a must have!
3. Decent size yard
4. Be within the town/school district we want
5. Be a big cosmetic fixer upper, but no health hazard fixes. We will fix it up as we go along, project by project :-)

I'm a simple, modern-ish, minimalist, constantly-purging-old-clothing-and-items kind of girl. I don't own knick-knacks and have very little on display. I am pretty minimal in my design.

1 story homes makes sense too. I don't want a ton of extra rooms to clean. I can't really do stairs that well anymore (not on a daily basis anyway). Logistically, a ranch is the way to go for us.

Since I'm an architecture buff and want to be environmentally friendly. I want a small eco footprint. I want a fixer upper in order to upgrade items myself, so I can make them energy efficient as we replace them.   Also, I want to enhance whatever era/style of feeling of 1 story home it is... Whether Industrial/Modern or historical/1920 (even a bungalow would be okay, if most rooms on main floor)-or 1950s charm ..If we built a house it would inspired by prairie style - concept by Frank Lloyd Wright (who I LOVE if you didn't know).

(pictures of me at the Martin Home- by Frank Lloyd Wright in Buffalo, NY)
Most 1 story homes we have found in our area have been updated with new (but cheaper non-energy efficient) appliances and white carpet with white trim everywhere..As you know not my style. It's nice, pretty, and great for lots of people. But it isn't my cup of tea, ya know? We don't think building is for us. I love fixer uppers. I have helped various friends fix up their homes & want to bring an old home back to life!  Although, Andrew did find a house that looked like hoarders lived there, but I think we would need to save up a bit more for the remodeling/cleaning up costs. LOL. Sooo that might be taking it a little too far for our first home.

Finding a balance between too much work/renovations and the right amount of work for us is difficult within the small area we are looking. But that is our problem to deal with, so I'm not too much in a rush to buy the first home we come across, unless it's like that "Tah Dah" moment... Similar to the feeling of my wedding dress! LOL - Home buyers all are very different, some laid back, some particular, some practical, some dreamers, I'm trying not to label myself. It's hard, not to though. I think, I may be my hardest client.. Granted, I've only been a realtor for 2 months, so I have only really had a handful of clients so far.

We plan on going to the informative "Fostering"  night next month, so we can see the typical timeline to proceed for this area and go from there!  Sometimes the classes are 1 night a week for x number of weeks (up to 6), sometimes its multiple nights in a rows for multiple hours. Depends on where you take the classes, so we will have to find one that works with Andrew's schedule. Hoping to have classes finished by August, a home purchased by then, and then we can make our home "kid friendly" - child proofing, etc. Although we don't need baby proofing (our children we are accepting will be between 2-10 years of age). 

My wish is to be ready and settled by August our wedding Anniversary and ready to accept children into our home that fall with hopes to have a kid in our home by Christmas! 

Crazy to think Feb 16th is our 6 month Anniversary!Wow, time has flown by!  6 months already. It's near Valentines Day, haha.
Oh and my blog will be 4 years old that week too! I'm not the biggest fan of Valentines Day, Andrew and I still usually make a nice dinner or go out to eat, exchange cards. But no fancy gifts etc. He'll usually buy me flowers, a new nail polish, candy, or something small and sweet. I make him a card and get him a little box of candy or something. Actually since we got married I have been saying no gifts, just keep putting money towards our future home! So we will have to discuss what we want to do for our 6 month Anniversary/Valentines Day! Wow, time has flown by!  Read all about our wedding in this post here!

Some upcoming posts include the topics below (which I started writing),  but feel free to ask me questions or let me know if you have topics you want to hear about!
 -Blog's 4th year post
-my personal FitBit reveiw (not sponsored)
-Great Strides Season is Here & my National Fundraising Team
-my eye surgery

      Hope you all had a fabulous weekend and enjoy your evenings! We will be watching Downton Abbey!