Monday, October 24, 2011


I am angry at the world today.  It has been an unusually tough week, but today just seems like the tipping point.  I want to just blow up and unfortunately, it is my husband who is the only human here for me to yell at.  I have managed to avoid yelling at him so far, but I need an outlet and I need it quick.  I already tried one thing: I went over to him and I told him to just ignore my nasty look for a few seconds.  So, I then proceeded to give him a dirty look and run all of my angry thoughts through my head in rapid speed, hoping that if I just thought them and not said them, that it would make me feel better.  It didn’t.

I am now up here blogging, still trying to figure out WHY I am mad, hoping this will relieve my stress.  I think it’s a lot of things.  This week was already difficult due to finding out my LAS score was increased to the point that I could expect a call for transplant any day (Read more here).  I wasn’t really thinking about transplant that much, but this magic number of 40 just all of a sudden made it so real for me.

Second, Joe hurt his hand during a camping trip (Read more here) this weekend.  I am angry at the situation of course, I am NOT directly angry at Joe – accidents happen.  I am just angry because I didn’t really want him to go on this trip in the first place, and if he wouldn’t have gone, he wouldn’t be injured.  He is now limited in some of the ways that he’s been helping me (including ability to do hand treatments) and it just isn’t the right time for this at all, especially because I may be called for transplant.  I KNOW he’s really upset about it too, so I have not given him a hard time at all about it, because that is the last thing he needs.  I want to be supportive while he heals, but right now I am just so angry about the situation, I want to scream. SO I AM SCREAMING RIGHT NOW!!!!!   I am totally holding in all this emotion right now and it’s putting me in a really bad state of mind.

Third, I am mad at myself for being lax these past two weeks about getting my butt to rehab.  I only went once last week and it was realllllllly hard for me to get there today.  I’ve just been so depressed these past two weeks, but I know in my heart that I will feel better after I work out, so I just need to get back into it.

I have just been on such a streak of positive-ness, that I suppose a funk was bound to happen, especially with these events occurring all in the same week.  I just need to find a way to vent, let it out and get positive again without taking it out on my spouse.  That certainly won’t make anything better.  I feel a little better now that I typed all of this out.  Hopefully a good night’s sleep and good news tomorrow for Joe’s hand surgery (positive thought!) will turn my frown upside down.

Tuesday, August 23, 2011

Don’t Judge Me

I think people read too much into things.  People are so quick to judge that it makes me feel they are only expressing their own suppressed emotions about the situation.  You may think I’m talking about Cystic Fibrosis and how people judge me everyday – whether it is my coughing, oxygen tank, or  handicap sticker – and if I am this way because I was a smoker.  Or, how I’m so brave and strong and it must be difficult – I don’t really feel like I am braver or stronger than MANY other people I know and I don’t really think on a daily basis how difficult my life is.  I actually enjoy my life very much and simply put, look forward to getting back to it 100%!  This is a little bump in the road.

Anyway…..back to judging….I journaled my thoughts about this today because for some reason it was really weighing on my mind. I  have a very simple example of the judging I am speaking of.  A question was posted by an acquaintance on Facebook about why people care about the Kardashians.  First, why are YOU asking if YOU don’t care about the Kardashians?  Just wonderin’.  Second, there were so many people that decided to chime in on the subject who NEVER watched the show.  I was the only person who stated that I watched the show as a little escape from life because sometimes I don’t want to do anything for 30 minutes and want to live vicariously for a half hour – plus they make me laugh.  I felt my answer was honest, fair and pure.

One of the many other people who decided to comment (total of 13 nay-sayers) to analyze why someone would watch the show when they’ve never seen it stated that a person (I am inserting myself here) must watch it to “…feel superior. And if you can feel superior to rich people, it takes some of the sting out of the inequity of our system. But don't trust me on this: I've never seen the show, just the clips satirized on "The Soup." That way I get to feel superior not just to the Kardashians, but to the people who watch them.”  Interesting this statement is coming from someone who watches The Soup.

Now, as I said before, my answer was pure.  I watch it because it makes me laugh and takes me out of my crazy day for 30 minutes. Period.  I don’t watch it to feel superior or because I’m “not the star of my own life”.  You can’t assume that someone who watches the Kardashins isn’t someone who also enjoys NOVA, reading books and is a college graduate.  If these people truly didn’t care about the Kardashians, they wouldn’t have taken the time to comment how disgusting it is, right?  Didn’t psychology teach us you have to care in order to hate something? 

I say to each his own.  I don’t understand why my cousin watches Jersey Shore, but I would certainly never assume she’s stupid or wants to feel superior by watching the show.   I would be open and ask what she likes about it, and if I don’t want to watch it, I simply don’t have to, but I don’t have to judge others for doing so ( just the occasional family teasing). 

To all of those haters out there (and all you tweeters) DONTJUDGEME# =).

Wednesday, August 17, 2011

I'm Famous!

Today, an article was posted in the Lake Forester about me, CF and transplant!

Read article here.


Monday, August 8, 2011

You know you have CF when…

This was recently posted on CysticLife, a forum I follow for Cystic Fibrosis.  It struck me funny and wanted to share.  I did remove some that didn’t apply to me and tweaked a few to apply more so to me.

*You do a happy dance when you hack up a huge wad of mucus, show your hubby, and he gives you a congratulatory high five.
*You know more medical terms by the age of ten than most people know their whole lives.
*You have your pharmacist, family doctor, CF doctor, transplant doctor, endocrinologist, ENT that you always use, home supply company and your medical insurance company as numbers 1-10 on your cell phone's speed dial.
*You have multiple scars from PICC lines, IVs and other 'experimentations' as the doctors like to call them.
*You are so used to getting your blood drawn that you are the proverbial 'test dummy' for all the new nurses fresh out of college - you don't mind, do ya?
*You have antibacterial gel in your purse, in your car, on the kitchen counter, in the bathroom, in your friend's dorm, in their car - hell everywhere!
*You can instruct the nurses how to work the IV machine at the hospital.
*You have also learned who your real friends are because most people can't take the pressure of being around a person who has CF.
*You make people wince on a daily basis because of the sound of your cough.
*The checkout lady at Target has confidently told you that she just got over whatever I have and Theraflu worked for her, which you calmly say, 'I will be sure to try that.'
*You can sleep through anything - you perfected the skill by being shaken by your Vest all of these years.P1020364
*You are a multi-tasker by need. While you're doing your Vest you MUST: eat breakfast, do your nebulizers, work, play with the dogs and have a conversation with your hubby about the days plans all at once or it would never get done.
*You learn by the age of 15 that life is a gift and most people don't see it's pretty paper.
*You have used your Vest multiple times as a torment device for your dog by blowing air at him and watching him try to catch it in his mouth, entertainment device for kids because a shaking vest is a fun 'toy' and a laughing tool for adults when you try to talk to keep up with the conversation, even on the maximum setting. (SO TRUE)
*Many adults have commented to you that you are very wise/mature for your age.
*You feel as if there is ALWAYS someone worse off than you somewhere.
*You are more scared of losing your loved ones, family and friends than you are of dying yourself.
*When dogs and babies lick your ever-so salty skin.
*After working out, or just being in the heat, you have a visible film of salt covering your entire body.
*You look at food labels and say things like, "Sweet! 600 calories per serving!"
*You are so tired of people saying "have another smoke!" after you finish a coughing fit, and you wonder if they are worth the real explanation.
*You have an extra dessert and everyone wonders where you put it, because it sure doesn't go to your hips!
*You make sure you don't go to the bathroom BEFORE you get weighed at clinic - every ounce counts!

Saturday, August 6, 2011

A Look Back On College

I don’t think my college experience was typical.  Freshman year, I got permission to live in a room by myself, so I missed out on having the roomate experience my first year and received a lot of questions about why I was able to have a room alone.  At this point, I didn’t really feel like explaining my situation to everybody, so I just usually told people it was by chance or that I had a health reason.  I resided in the all girls dorm and met a good cluster of friends there and things were going great.  This happened to be the year my parents got divorced as well, so I was dealing with a little bit of emotion there, but overall, it didn’t affect me too much.

My sophomore year, I roomed with a  friend I met my freshman year.  This is also the year I started dating Joe.  To say this year was full of turmoil is probably an understatement.  My roomate and I had our set of problems and I spent a lot of time back home living with Mom and commuting to school, even though I paid for room and board.  I lost a lot of my friends this year due to the roomate issue, but thank goodness I found Joe and a set of friends outside of school to keep me somewhat sane.  I also worked at Coldwell Banker on the weekends and Quig’s as a waitress on Fridays.

Junior year, I chose to live at school, but I did not have a roomate.  I met another friend that year thatpunkin1 I hung out with a lot and we were inseparable for a couple of years thereafter. I had my bunny, Punkin, in my dorm room for company. Joe was still my main squeeze and I would go back and forth to UIC in Chicago to visit him, since we no longer worked at the same place.  I think it may have been this year that I had a hospital stay and my lung function had reached a new lower baseline that I couldn’t seem to get back up.  However, things seemed to be looking up.  One more year until graduation and I could rid myself of the toxic social atmosphere!

Senior year, I lived at home since I was taking half the amount of classes and writing a Senior Thesis.  This worked out well and I could not wait to graduate and be DONE with school.  I wanted to join the real world so badly! A lot of this year was spent at Barnes and Noble finding the motivation to write about the Flat Tax.  I was granted honors for my Thesis, inducted into Phi Beta Kappa, graduated Magna Cum Laude, and was inducted into both the Economics and Spanish Honors Societies. Graduation day was so fulfilling!


Before we started our lives in the working world, Joe and I took a vacation to Fort Lauderdale.  We were pretty starved for cash, so we tried to make do very cheaply on this vacation.  I will say that we learned a really good lesson about vacation planning and having enough money to actually participate in activities once you get to your destination.  This is one mistake we won’t make again. =)


I found my first job at eLoyalty soon after and then was soon recruited by Hewitt Associates.  I started as a Quality Assurance Analyst and worked in Northbrook.  I started on a huge client pension implementation.  Immediately I was thrown into working upwards of 60 hours a week.  I cried almost every day for a couple of Karaokemonths because it was so awful. I honestly do not know how I survived and came out a winner on the other side.  I do give a lot of credit to the wonderful friends I met there.



I was so stressed out.  For a while, Joe and I were having a difficult time because I was so stressed from work, he was trying to find his place in the workforce, and we were learning how to fit together in this new environment.  I sincerely believe that this stress in my life caused my Cystic Fibrosis to progress faster.  After 2 years, I was able to get off of that awful implementation, but the damage was done. My lung function was going down, I started needing hospital stays about every year.  So, the journey into the next 6 years of my life begins – being an adult living with CF and feeling it take over within the last 2. 

All said and done, I feel lucky with all the experiences I’ve had - it makes me who I am – strong-willed, tenacious, fiery, caring, loving, honest, understanding, wise, and silly.  I mostly would not change them – except I would not have worked so much and I would have kept exercising!  But, why dwell on the past?  I am looking towards my future…….and it’s looking bright.

joe and me

Sunday, July 3, 2011

Cystic Fibrosis….Part 1

I think of myself as a very well rounded person and I don’t believe I have one certain attribute, trait or aspect that defines ‘me’.  That is why it seemed wrong to make this blog about one topic.  It does seem fitting, however, to devote some of my writings and reflections to Cystic Fibrosis (CF).   It has really been prominent in my life over the past 2 years, where sometimes I feel like all I am is CF, more so than ever before.  Don’t worry!  I quickly reject those thoughts as I think of the many blessings that I have been granted in life,  strength God has given me, and the love and warmth in my heart that I can share with others.
So, CF. Where do I start?  I was lucky to have a childhood that was minimally impacted by the disease.  I had friends, went to sleepovers, played outside, was a good student, outgoing, opinionated, strong and spunky.  My Mom would perform manual chest PT, where I would lay in different positions as she used her hands to pound all over my back/chest for 30 minutes, twice a day, so I could spit out mucus.  I really don’t remember this much – although I am sure my Mom will tell you I probably fought her tooth and nail and hated doing treatments.  I do remember I would do the treatments in front of my friend Andrea, and she always wanted to help!  I think in 6th grade we purchased The Vest, which was a plastic strap on vest that would blow up with air and shake the mucus out.  I also did a few nebulizer aerosol treatments like albuterol and antibiotic medicine.
I was hospitalized a few times for lung infections before the age of 14, but I sort of remember them as fun experiences where I played with other children, painted pictures, played games and had really nice nurses.  I am sure at the time it was probably not all fun and games, but  it’s good that I don’t remember it being a bad experience. 
I had to take pills whenever I ate food to help digest the fat and absorb proteins/vitamins.  This was more of a nuance and became embarrassing when Mom would ask for cups of water at fast food drive-ins because “my Daughter has to take her piiiiiiilllllls”.  At that time, I was thinking, “seriously Mom, just pay 10 cents for the cup and stop sharing the fact that I have an illness”.  It also became annoying that I could not go outside/be in gym class on hot days for fear of heat stroke, as CF causes you to sweat incredible amounts of salt.  Don’t worry, Mom was on top of that too, making sure the school had plenty of Gatorade at the nurse’s station (embarrassing!).  Outside of these medical treatments, everything else was normal.
In high school, I had friends, played soccer one year, was in chorus, enrolled in honors classes, had my share of boyfriends, went to parties and dances, and was lucky to stay out of the hospital until sometime in college.  I think my experience was pretty mild for a kid with CF – I was so lucky and I count my blessing everyday for this.  A lot of children need to have feeding tubes, stomach/intestinal surgery, longer hospitalizations, they have antibiotic resistant bacteria in their lungs causing such damaging infection and some are not able to go outside and play.
So, that is a little history on the first part of my life.  My next posting I will talk a little bit more about life as an adult and how CF has had more of an impact on my life recently.  To learn more about Cystic Fibrosis, please see Cystic Fibrosis Information on the right side of page.  One day soon, I will do a summary explanation of the disease.
Neat website I came across that shows what the Vest therapy looks like:

Monday, June 27, 2011

Why am I starting a blog?

Why am I starting a blog?  Am I jealous of all the established bloggers out there and wish to throw my voice in the mix?  Not really.  Do I live an exciting life that I think everyone wants to read about?  Definitely not.  Do I have a specific topic which I’m gung-ho about?  Nope.  

I suppose it is purely for my own mental health and sanity.  I have never really liked to write; I never had a journal or wrote myself letters when something was weighing on my shoulders.  Since my health has forced me to stop working, I find my mind has nothing better to do than focus on things so intensely that never used to consume my mind before.  For example,  I was in agony over finding a new laptop to purchase.  I had a week full of nightmares, restless sleep and constant worry during the day about finding a good deal.  While this can be an expensive/important purchase, it’s certainly nothing to have nightmares about.  After I finally made my computer purchase, I spent a ridiculous amount of time agonizing over the right anti-virus software and then, after that, configuration of furniture in my office.

I seriously need something way more constructive to do than the aforementioned items!  I see now that writing allows a person to release that energy that is encompassing their mind.  Once it’s down on paper, it can be free from your mind and bring peace.  Joe also made the observation that I am reading a lot of books now, which I never really thought I liked to do, and that writing is probably a natural progression from reading.  Smart husband, huh?

So, to reiterate, this blog is really about nothing in particular; just an arena for reflection, contemplation, stories, topics, etc.  Thanks, Erin, for the suggested blog title!