Long time, I see.

In reference to the post below, I still haven't seen the results.  It's been almost a year.  I still remember that day-- I curled up on the floor of my apartment and cried.  I should have remembered that science takes forever.  Not their fault, I understand that.  I just should have known to not count those chickens just yet.

Hello world! I don't post much for a few reasons but primarily because I grew tired of it.  Occasionally, like today, I'll decide the posting isn't sure a tough thing to do.  It's nice to be heard every so often.  I do have a second "blog" for my personal thoughts and feelings. Things that don't need to be shared with the world around me.

I also don't post as often because a lot has changed in 10 months (shocking, right??).  I moved home in June of 2012 and finished out college commuting back to my college town.  I also took a few classes from home and held an internship at a local gym for the final two quarters of college.  Then, on Nov. 17, 2012, I graduated college early by two quarters.  *high fives all around*  Backing that time-table up about a month, I also started a "big girl job" in mid-October.  After I graduated, I went on a graduation cruise with my mom, and began working full time (8-5, M-F) the Monday I came back from my cruise.  Very exciting, very busy.

I also shifted away from the blogging world with my new job because, like a fellow blogger (Unknown Cystic), I don't want to put my career in jeopardy just because of my health.  The internet is an incredible thing, but has the potential to ruin lives.

I also recently turned down the chance to be a local "face of CF" as a part of a really great fundraiser locally.  I've supported and attended the gala they host when I'm able to, but this would have made me the key speaker and face in the media.  I was all for it until I was employed.  I'm sorry, but I just can't.  I was a recent speaker with my mom on the Mother/Daughter Perspective of CF for local CF families hosted by my clinic.  It was a great event and we had fun doing it.  It's on YouTube.

Speaking of YouTube, my work did a Harlem Shake video.  We're the first in our industry to do one and the other companies got called out by observers.  It was tons of fun.

Ironically, after noting that I would like to keep my job despite my genes, I'm home sick today.  It's the first full day I've taken off for feeling UGH.  Remember all that belly pain I've had since late elementary school? It still haunts me.  I actually had a recent colonoscopy to see what was wrong.  Verdict? "You have a normal colon. Nothing is wrong with you."  WRONG.  Just because we can't see or determine the problem does not mean nothing is wrong.  The highly respected doctor who performed the colonoscopy suggested it might be my diet.  I mentioned this to my CF doctor who scoffed.  "Doubtful."  Still back on square one, in pain and still "nothing wrong."

For the record, I cried before my colonoscopy many times.  Was I afraid? Was I in a lot of pain? No and no. I was HUNGRY.  I was waiting for them to put me to sleep and tears are running down my cheeks.  The nurses were great and worked to console me letting me know that there is nothing to fear and it will all be over soon.  I just looked at them through my teary eyes and said "I'm not afraid, I'm hungry.  I just really want to eat."  I'm not sure they quite knew what to do with me.

Think about it! I couldn't eat for 24 hours.  ME.  Or drink Dr. Pepper.  ME!! I had a lot of juices to choke down the solution to "clear me out."  I got so physically sick of sweet drinks that I started sucking on the cajun sweet pickles that my mom makes at Christmas time for some spice.  Sad, I know.

Recent doctor visit revealed that I would benefit from some IV antibiotics, but it wasn't an emergency.  I made a deal that she let me wait 6 weeks and be reevaluated because I was beginning playing soccer again and running once more.  I was making a serious effort to improve my cardiorespiratory health and I wanted to see if that would help before we made any decision to send me to the hospital.  I've been running every day since.

My running partner, aka the boyfriend, has been great.  When our work schedules allow us to run together, he meets me at the gym closest to me and we run.  He gives me the push to keep going without pushing me to a breaking point.  I've also lost several pounds over the last few months and he's declared that I'm going to eat as much as he does, if not more.  We'll see how that works out!

Speaking of the boyfriend, all is well in that department.  ("well" is the understatement of the century, actually.)  We're extremely happy and things just make sense.  It's nice when your best friend is also your boyfriend. :)

Speaking of friends, one of them (aka Emmons) is turning 21 in August and someone in her family got the great idea to have a serious celebration... IN VEGAS.  Come late August I will be flying out with her family for a 21st birthday party in Sin City.  I'm sure there's nothing that can go wrong.. haha!

Two of my other close friends are getting married in November.. on the same day... in different cities! Bummer! I'm very excited for them both and can't wait to celebrate with them!

On that note, I think that's all the updates I've got so far.  Well, I'm sure there are plenty more, but that's all I've got for today. One more reason I don't blog, before I forget: I spend all day at work at a computer.  I really don't want to get on my home computer once I leave.  It's just not appealing to me.

Ciao.

Interview with Fatboy and Beautiful!

Many thanks to CF Fatboy and his wife Beautiful for taking time out of their busy schedule to answer a few questions!

Fatboy's interview!


1. Tell the blogging community a little about yourself, Fatboy.
We live in Tampa and I graduated high school with a full-ride scholarship to USF (Go Bulls!), which I promptly lost and had to get a job. 13 years later, I finally graduated and got on with my life with that monkey off my back. I proposed to Beautiful the month after she graduated from USF (we dated her whole time at college) and were married that fall. That was 4 years ago! We now have a townhome, 2 cars, 0 kids, and 0 pets - almost average by all accounts.

2. When were you diagnosed and how did your family react?
I was full of crap coming out the chute, so they knew I had issues. I suppose they were freaking out about how to pay for all the surgeries I needed and relieved to know what was wrong with my older sister. She lost her fight a couple years later, so all of their energy was spent keeping me going, and here I am - 32 years old living life better than they could have dreamed 28 years ago.

3. What are your gene mutations?
ΔF508/ΔF508

4. Tell us a little about your medical history; surgeries, hospitalizations, and anything else other than CF that plagues you!
Meconium ileus, jejunal atresia, 10 sinus surgeries, and countless blockages. I have a knack for getting in-grown hairs that require a trip to the family doctor for some scalpel work. Other than that, CF is pretty much the root cause of all of my health issues, though I may be facing diabetes (even from otherwise healthy family members) and rheumatoid arthritis in the next 10-20 years.

5. What has been your greatest motivation throughout the years to stay healthy?
Times past, nothing. Now, I have Beautiful. I'm not allowed to die before her.

6. What has been your greatest challenge?
Finding balance between relationships, work, health, and "me time." I am a workaholic who is a recovering lazy butt by nature (though never really by actions - strange, I know) who is finally living the dream of owning my own company, working from home, and finally trying life with one income for some added sanity. This constant drive to work has a negative impact on my health because stress directly affects my weight and ability to fight off infections while wife and "me" time are left fighting it out for the available time when I'm not working.

7. Who is your greatest inspiration and why?
I'd have a hard time deciding between Beautiful for putting up with me and Joseph in the bible for all the crap he went through being sold into slavery and how he persevered to become the second most powerful man in the land. I sometimes think I have his determination, and that helps keep me going sometimes. It's a great account of a great man, for those who haven't read the whole thing.

8. What is your greatest fear about having CF?
Leaving Beautiful with a mortgage and a bunch of business deals that she would have to make contact with to tie up lose ends and some freak thing where my life insurance gets denied on a technicality, leaving her only with what we have saved. I do NOT want to leave that as legacy!

9. What are you most grateful about for having CF, if anything?
It keeps me humble. It's my thorn in my side. That's all I have to be thankful for having it, even though some nice things have come from the people I meet and things I do, but I'd never wish it upon my worst enemy.

10. What are your goals for your CF health and your life in general?
I will be here for the cure and the eventual progress with transplants to get new lungs after they perfect the whole rejection thing and will outlive everyone in my generation and above me, looking like a pro athlete all the while; the more like a linebacker, the better.

11. So why did you enter the blogging world and what did you hope to accomplish with it?
Unrelated to CF, I started blogging in 2005 and made quite an alias name for myself back then. One thing led to another to another to another, and when I was finally ready to turn my CF health around, blogging about it was the natural thing to do. I aim to change the standard of thinking about CF and what people can do with it and how they can beat its natural progression.

Now that all of those tips and steps are there, I am moving more into motivational topics. It's so easy to default to letting life get you down, even for healthy people, so anything I do to put some positive things into daily living to stand out from the din of depression that is the majority of life's input into our minds will hopefully help others, too.

12. Continuing with the previous questions, what HAVE you accomplished with your blog?
I've heard from quite a few people that I've done just that already, so I aim to keep on keeping on. So far, moms have changed their thinking from despair and grief to hope while guys just like me have ditched the idea that CF has complete control over when we go on IVs, making gaining weight a key component to healthier life.

13. Why did you decide to sell the CF Awareness Bracelets and how would someone go about ordering one?
I decided to sell them after we attended our Great Strides walk and they gave us yellow bands for the leaders (Hello, Lance Armstrong) and blue ones for the other walkers. What the heck? CF's color is purple. I looked around and couldn't find any purple CF awareness bands online. I'm out of stock right now, but we just ordered more this week, so when they arrive in the next couple of weeks, they can be snatched up at http://www.cffatboy.com. Coming soon, we will have some more options for CF awareness, but we are going to work out those details when I have finished some more projects.

14. So I read on your blog the other day that your wife is now working with you. How’s that going?
We are 2 days in and so far so good. We just celebrated our second company anniversary on Groundhog Day!


And let's hear from Beautiful!


1.Tell us about yourself, Beautiful!
I'm 26 years old. I'm a University of South Florida graduate. I majored in Business Administration with a minor in Marketing. I married the best husband ever, 4 1/2 years ago. I enjoy shopping, scrapbooking, reading, and blogging.

2.When did you and Fatboy start dating? How did you meet?
We started dating right after I graduated from high school. Our families went to the same church, so we met doing youth group activities together. We dated all through my time in college, and got engaged as soon as I finished my degree.

3.When did he tell you he had CF and how? How did you react? How were you able to accept it?

I kinda always knew something was "wrong" with him, but I didn't know what it was. It was pretty sad and scary to think that he was never going to get better. I just had to decide that I would rather spend as much of my life with him for as long as he had, then to leave him now because of the fear that he might get sick sometime.

4.What roles do you play in Fatboy’s health?

I try to encourage and remind him to do all of his treatments everyday. I keep track of all of his prescriptions and fill his pill container with his daily vitamins. I also try to plan meals that I know I can add a little extra calories/fat to his portion, like topping his half with extra sauce or cheese.

5.You have a blog of your own! Why did you decide to start blogging and what did you hope to accomplish with it?

Jesse had been trying to talk me into my own blog for a long time. I honestly didn't think that anybody would read it. Then I realized how much time I spent enjoying other people's blogs and thought I would finally give it a try. I really enjoy it because it gives me a chance to process things that happen in our lives and share them when I'm ready. The best thing about blogging has been all of the CF friends I have been able to meet. It is so great to get to know other people that are going through the same things that you are.

6.Are you excited about working with your husband from home?!

I am so excited about starting to work at home. We have been wishing we would be able to do this for a long time. I can't wait to see what great things we are able to accomplish this year by putting all of our energy in one direction!



Thanks again! Please pay them a visit at www.cffatboy.com and www.kristinology.com!

-Andrea

Every Life got an award!

I got an email the other day saying my blog was being recognized as one of the top CF blogs of 2010! How cool! I now have the badge over in the top left corner (as you may have noticed). I'm just really excited about it. Another thing to be thankful for!

My thanksgiving post is coming soon! I'm thoroughly enjoying my break from school though. Tonight, Zumba with Mom!

Thanks for the award Registerednurse.org! Click on the badge to see who else won too!

-Andrea

Cayston: Complete picture walk-through

*Warning- a TON of pictures up ahead!*

*And click on the pictures for a CLOSE UP! And keep an eye out for my CF awareness band!*

*Lastly, thanks to DAD who took my cleaning pictures while I was demonstrating! A huge help, thank you!!*

Thanks to Feedjit, I notice that many of the searches that lead people to my blog consists of the word "Cayston". Since it's a new drug, I thought I would post a non-sponsored, completely my own advice walk-through of how I clean and use Cayston.

It starts off with the cleaning and then moves to the usage. Sorry, it's late, so I posted them backwards. You'll live. Just scroll down if you want to read the usage part first. It's labelled with a big, fat title.

Disclaimer: This is information I have either gotten from the CFF website, from the information sent to me with Cayston, or my own variations. It is not official medical advice, just something I thought might help people who were as lost as I was when I first started Cayston.

Mom's Disclaimer: Sorry if you see any sort of messiness or clutter. Pretend you didn't see it and move on. Thanks!

CLEANING!!!!

First, you need to get some dishwashing detergent that is *NOT* antibacterial!
For cleaning, this is the setting and the actors: dirty Cayston pieces, the detergent, and the Ziplock containers they sent with the Cayston stuff for the first time.
With warm/hot water, we rinse out all of the non-metal Cayston pieces...
....and place them in the Ziplock container, which is filled with detergent and warm water.
I usually separate the grey piece to make sure I get it all washed out. (WARNING- if you have a sink with two halves, use the side without the open drain! If not, cover it up... you don't want those pieces falling in!)
Rinse....
...and drop in the same container as the body.
Rinse both the blue rubber piece...
.... and the mouthpiece thoroughly, getting all of the openings too.
And in they go with the other plastic pieces.
Close the lid.... (but don't turn it all the way, because it's really hard to get back off)
...and shake it up!! Warning, water will go everywhere.
Rinse the head in a slower stream of warm water... both sides. (Note: this is also done immediately after finishing a Cayston dose)

Open the container with the plastic/rubber pieces and rinse them off individually with the warm/hot water. Set out to dry (see later picture)

This is how I set them out to dry. They don't stay here but more than a minute while I set up the sterilizer (aka Nuk baby bottle cleaner that they sent with the first Cayston dose)
Since I also washed the containers while washing the pieces, I set them out to dry. (For each paper towel piece you see, there is a second one under it, giving it a double-layer)
In the front of the baby bottle cleaner, there is a measuring cup. It took me WAAY too long to find it on my own, sadly.

Fill up to about the top.

And pour it in the metal pan
Here is the gut of the baby bottle cleaner.
This is where the main piece will hang, using the hinge of the piece. It will only fit 3.
Here's the top rack of the baby bottle cleaner. This is where everything else goes. I have mastered fitting in 3 Cayston sets in here without anything overlapping. Observe:
First goes in the head, which cannot lie flat. However, they fit perfectly around the legs of the middle knob.
Like such.
Next comes the assembled top piece, which fits between each head, making three points on a triangle.
The rubbed blue pieces, which I lay "face" down, will cozy up to the grey tops nicely.
And that leaves plenty of room for the mouth pieces. Perfection!
So now we put the gut of the baby bottle cleaner back on the metal pan
The rack on top of that
And then the lid!
Now, we have the one solitary button on this machine. What to do?

We push it down of course! Oh look, a light comes on! It will run a few minutes (the book says 8 I think, but it never seems that long to me) and you might hear a quiet "pop" noise. That's it for an alarm. However, you don't want to open it immediately after it's done, since it will be super hot and steamy (like me... juuuust kidding). So give it a few more minutes and take the lid off. It will be covered in condensation. I turn it upside-down, hit the knob on the counter to gather the water, and dump it in the sink. Problem solved.

This is how I lay them all out. Notice I open the grey pieces because the white part retains water. The blue rubber part doesn't air out well, so I prop it up on the mouth pieces and it does much better. Can you tell I'm an engineer's daughter?
I also prop the lid up so that it can finish drying too.

USAGE!!!!!!!!!

A little while later, after everything dried, it's time to do a dose!!! This is the glass bottle and plastic ampule that will be used. They are kinda cute.
First, we need to assemble the pieces. Take the large plastic one and open it.
The head goes in that funny looking side as such. It kinda snaps in.
The blue piece goes in opposite the head.
Close it!
Attach the mouth piece
This is where it connects to the power source/machine. It has a hinge and GENTLY snap it on. Mine is already broken in two places, but still works just fine.
This is the almost ready Cayston piece
The machine
The battery compartment is in the grey area. But if you don't want to use batteries...
This is where the hole is for the other end of the wall adapter. It comes with the Cayston stuff as well.
This end is for the hook up of the grey piece we already attached to the mouth piece a few pictures back.
We need that cute glass bottle again! Take the aluminum tab, pull down, and start pulling around to get it completely off. It breaks occasionally and can be a pain, but it needs to come completely off.
It will look like this!
Empty the ampule into the glass bottle, put the grey stopper back on, and SHAKE! It needs to be clear to inhale properly.
Pour it into the top of the mouth piece. It will only be about this much.
Put the grey piece on and turn to make sure it is closed.
Press the solitary button and hold for a few seconds. It will beep...
....and this screen will appear after the PARI screen. This means Cayston is going!
No talking! It's very short so if you need to take it out of your mouth, press the lonely button and hold to stop the treatment. It won't be happy with you, but it works. Like that I'm in the kitchen still?
It will beep 2 times and show you this screen when it's done. (Sorry it's hard to see) It lasts around 1 1/2 - 2 minutes. My piece will sometimes "click" a few times right before it's done, but I'm not sure if that's everyone, but if you hear that noise, don't panic!

GENTLY pull downward on the grey back connection to release it.

Open up the body and free the head. (It has tabs on the side you need to push in to get the head out)

Rinse both sides IMMEDIATELY after usage, and set out to dry.

And as an added bonus of fun, those nifty Ziplock containers they sent, they hold the Cayston pieces perfectly (probably the reason they sent them!)

Hope this was helpful!!

Link to the CFF Cayston video

-Annie