This Is My Fight Song

If you have not heard this (Fight Song by Rachel Platten) song please take the next 3 and a half minutes doing so.  (Uploaded from YouTube)

"Cause I've still got a lot of fight left in me" 

- It been a while since I have updated and quite a bit has happened.

In early August I was in the hospital, once again.  However, this seemed to be a good and bad experience all rolled into one.  The bad was that I ended up the the Medical Intensive Care Unit (MICU), the good is that they were able to find the bleeding in my lungs and did a procedure called Arterial Embolization to help stop it.
As you know I have been dealing with coughing up blood for some time now.  As uncomfortable and somewhat painful as it is to experience, it is more frustrating because nothing seems to help.   We had tried this procedure a few times before and without success the Interventional Radiology team ultimately decided unless they knew exactly where the source of the blood was coming from, they wouldn't touch me again.  This time as I was actively coughing up blood leading into the procedure and then during the bronchoscopy (a procedure where they send a camera down into my looks to get a better look at what is going on down there).  This time they had it on film and knew exactly where it was coming from.  New blockbuster??

A week after the procedure and I was feeling much better and discharged from the hospital.  I was able to return to school that week.

In fact it was a crazy few days.  I was discharged Monday evening.  Tuesday and Wednesday I was packing my entire apartment up to move on Thursday.  Thanks to Aunt Patty, my mom and dad- we made the transition all the way down one flight of stairs.  :)
Thanks to my amazing guy friends, Jack, Perry and Lambert for being my muscles and helping me move all the heavy stuff.
We finished moving stuff around 11 on Thursday night and then Friday morning Dad picked me up to go the my brother, Jack's best friend, Mike Luzzi's wedding.  Jack stood up and looked so very handsome.  It was great to get together with friends and enjoy a night out after the previous two weeks.  My dancing took a hit but I had my date, Thomas-the oxygen tank, to aid me when I needed it.

It has been almost 2 months since I was in the hospital last and I would like to keep it that way.  I did however require IV antibiotics but I chose to do them at home and was fortunate enough to do that.  I have been able to remain in school and on Wednesday it will be the first time in YEARS that I did not miss one day of class!!!! (Nevermind the fact that these are only 8 week long classes, one day a week)  I even went when I had fevers and felt sick, but wanted to finish for once.  (Don't worry, I know my fevers are related to CF and I am not contagious)

In the mean time lung function is stable, however the blood has returned.  I have to just get used to it because there is no other option at this point.  It is frustrating and prohibiting my life in many capacities but as stated in the title of this post, This Is My Fight Song.  I will do the best I can and just keep chugging along.

Proud to be called a "CFer"

I recently read an article about a girl who said she did not like to be called a "CFer" because CF did not define her.

Well guess what?  CF does not define me, but it is also me!  As my favorite person says, "The things that make me different are the things that make me" - The ever so wise Winnie the Pooh.

Being called a CFer makes me different than everyone else, and I am.  I have scars only us with CF have.  I experience coughing constantly, nebs, medicine, hospital, bathroom issues (TMI), pain, oxygen, death of friends, transplants of friends, people telling me to get my cough "checked" out, people staring at scars or O2, more medicine than food in the fridge, crying sessions of "why me" and a million other things that no one under the age 25, let alone any age should have to go through.

No, I don't let CF define me.  I don't walk up to people saying "Hi, nice to meet you- my name is Katie and I have Cystic Fibrosis".  But I won't hide it anymore.  I am who I am.  Love it or leave it!
I will proudly say I am a "CFer".  Honestly, and I may be a little biased on this point, but we are the coolest people ever!!  Hahah.

For most of us, since pretty much day 1 or shortly there after, we have been a "CFer" and so much more.  But that one component- CF- is present in our everyday life, so yes it is a HUGE part of me.  Would I spent like 2 hours a day doing "The Vest" therapy and neb treatments if I didn't have CF?  Hell no!  I can think of plenty of better ways to spend two hours.  Not to mention money.  Thank god for insurance but if we didn't have it- I would be in some serious debt.  Around July it was over $500,000 in claims.  Don't get me wrong, I am on the track to be like a million dollar lady by the end of the year, look out men ;) but I can also think of a lot of better things to do with half a mil then give it to hospitals and docs.  Vacation anyone?

I know I can't speak for everyone but I think there are more than a few of us that embrace the fact that we are "CFers".
Thanks to Ian Pettigrew- he tracked down around 77 of us "Cfers" that were proud of what we go through and our scars and has started a campaign called The Salty Girls
 http://www.ianpettigrew.com/salty-girls.html

Here is a little sneak preview:

All of us decided to brave societies image on what women should look like and what defines beauty.  I have a scar in the middle of my stomach.  It cuts me in half and on hot days, it sweats.  Because of the CF, it is extra salty due to chloride not being able to properly go through its channel.  HAHA to be honest, Ive lived with CF my whole life, and I still don't completely understand what caused it.  Maybe Google can help?  All I know is that all of us living with CF should not be afraid to say we are different and we may be given a "generic" tittle- a "CFer" but so what?  

I have a feeling that people who meet me, don't remember as the girl who has CF.  Maybe, it helps place me?  But I think I have enough other unique qualities that make people remember me first.  And if they remember me because I am the girl with Cystic Fibrosis - so be it?  Don't tell me you haven't remembered someone or someones mother because they had breast cancer?  Cancer didn't define who they were, they are a person first and foremost, but that ugly disease reared its head in their body and maybe changed them for the better because of it.  I personally know a few women who are proud of the fact they had breast cancer and are now doing so well.  Good for you!! Embrace the fact that you were given such a (excuse my language) shitty end of the stick and a challenge, and thanks to modern medicine you accepted it and won.  Nothing to be ashamed of for having cancer.  Nothing to be ashamed of for having CF.  

So to the girl who said she does not like to be called a "CFer", I hope you change your opinion about it.  It's something to be proud of.  You have been given an enormous task in life, fighting Cystic Fibrosis.  Why hid and pretend it doesn't exist.  It does.  And every birthday, major milestone, or bucket list item you accomplish or pass is winning.  I know I want to win, do you??

Summertime is Finally Here

Summertime feels like its here (somedays more than others) but regardless it is nice not to have to carry a jacket anymore.

With summer comes going out more.  Its time to get out of the house and go out with friends, either to rooftop bars, concerts, street fairs, or just riding a bike along the lake. I love it.  However, with having more plans means there are chances that I cancel plans last minute due to not feeling well.

This is especially hard because I want to be "normal" and hang out with friends like everyone else but when you just don't feel good its hard.  I am certain that my friends understand but at the same time, I don't blame them for questioning how I was able to go out yesterday and then today I am laying in bed and don't want to move.  Unfortunately, even with CF hour by hour changes.  When having a coughing attack or spasm I feel horrible and will do anything to make it stop.  I just want to be home in bed or hooked up to my Vest and getting a neb to try and get it under control.  An hour or later when it stops, I might feel great and "I'm ready to parrrrtyyy" (Bridesmaid Quote)  When my lungs hurt and I can feel every breath in and out, it occupies my mind and all I want is for it to go away.
I know that everyone has ailments and despite them we all pick ourselves up and go out sometimes, or stick with our plans but it becomes a challenge when it happens multiple times week.

Its hard not to feel like the boy who cried wolf because I feel like I use "I don't feel good" all the time.  In fact, one time a friend was having a party and I wasn't feeling well, but hoped laying down would help.  NO, I ended up getting sick and coughing up blood.  I texted him letting him know I wasn't going to make it out that night.  His response was OK but I felt like he thought I was brushing him off.  I wanted to let him know I wasn't.  I sent a picture of the blood to him and said I swear I'm not lying.  Haha I forgot how gross blood can be to others.  He responded that he believed me and not to send evidence again.  Oops hope I didn't scare him for life.

Unfortunately, things have been getting worse and almost every night I get sick now.  My poor roommates hear me up coughing in the middle of the night, and most of my friends know that I don't sleep much.  I am up at all hours from coughing.  Honestly, the best sleep is during the day when I nap because I am so tired I just pass out.  It is so hard.  My body should need extra rest because it is working so hard but at the same time, because I'm constantly coughing, it stays awake and I can't get rest.

I could be doing so much better, I think.  I am slacking in school, but its hard to get up and read chapters or make case briefs when you were up all night feeling sick.  Eventually, I will get up and do a little work but then I am so tired that I have to nap and thats when the endless cycle begins.

*Medical Update*
Earlier in June, I was back in the hospital due to the blood, fever ect. the doctors decided to try another pulmonary arterial embolization ( where they go into my lungs and try to burn the blood vessels to stop the bleeding).  I have been through a few of these procedures before, and unfortunately they only work for so long before the blood comes back.  This time however, the procedure failed and did not work at all.  When the doctors got in there, they said they were unable to find the source of the blood and were unable to stop it.  As far as the bleeding and pain goes, they just said I have to "deal with it".  My frustration comes in because I don't know when enough is enough.  How much do I have to go through before I need to come back to the hospital?  Yesterday I stayed at my parents and around 12:30 right after I got home and laid in bed I felt it coming on.  Sure enough I coughed and the next 20 mins are history.  I tried not to wake my parents but when your daughter is coughing and renching blood in the bathroom sink next to your bedroom, how do you not hear that, and not respond?  I washed the sink out, went back to my bedroom and it continued.  I used Kleenex, sat on my bed and just cried.  When is it enough?  Moments later, my dad walks in, sees the pile of bloody Kleenex and only manages to get out "Oh God".   I don't think he was prepared for how much was there.  As helpless as I felt, I am sure he felt even worse.  At this point there is nothing either of us can do, only comfort me as I cry from the pain, and the feeling of defeat.

In the meantime, I have to continue life.  I spent the rest of the night tossing and turning, coughing , and managed to get a little more than 2 hours of sleep.  Fortunately, I was able to nap this afternoon, but again that only lasted about 2 hours before my cough retuned.  I know I am not the only CFer to experience this vicious cycle, and it sucks.

So here I am sitting in the coffee house attempting to do homework (AKA took a break to write this).
I got up, dressed up, and showed up to do what needs to be done.

As fantastic as it might sound to someone else, laying in bed all day is not that great. (I won't lie tho, the rainy days where you hear the thunder rumble and rain pitter patter on the roof, while curled up in blankets with a House Hunters marathon on is pretty great)  I would so much rather be a productive member of society and enjoy life.  However, until we figure out what to do with this blood and feeling like crap, I just have two options: suck it up and get out there, or lay in bed miserably.  Sometimes the latter is necessary but I have to try option 1 if I want to feel any sense of "normalcy".

Thank You Gunnar Esiason- Dating Life with CF

First and foremost, thank you Gunnar for taking my question I had about dating with CF and answering it.  He did an excellent job giving his opinion on the situation that many of us with CF deal with.  For both question and answer, please check out his Blog  It was the Friday, May 1, 2015 topic.

To add on to this subject, I would like to congratulate my parents, John and Eileen on their 30th wedding anniversary this past Cinco De Mayo, May 5.  30 years ago Tuesday, they said "I DO" and God Bless Them, because they had no idea what they were getting themselves into after that. Marriage seems to be hard enough, but throw in two kids, one healthy and one with a chronic illness and a job that requires 24/48 hours on then off and its amazing they stuck it out.

Jack( my brother) and I surprised them with a party.  We had around 50 of their friends join us for dinner at Hackney's in Glenview for burgers and a gathering.  Honestly, my parents have so many incredible friends that my brother and I had to cut the list to just 50 because it was growing so quickly.  Might I add that not one person said no to the invitation, including family and friends from out of town!  They flew in especially for my parents party, and for this surprise.  I feel so blessed to be their daughter because of such wonderful caring people they have been friends with over the years.  We were able to get their entire wedding party back together for the night, and I am so mad now because I don't think we ever recreated their "wedding" photo.  I guess we will have to all gather again for it another time!

Although I was a little stressed the week before the party, I had reason to be.  I was planning this event from the hospital.  In between treatments and sleep, I managed to call their friends and make sure this would be the surprise of a lifetime.  My parents deserved it!

Of course, I am feeling better now and the two week stay in the hospital went better then expected.  I was able to get some rest and come out of there feeling refreshed.  I was proud of not going too stir crazy and taking it out on the residents/my doctors.  (For anyone who has ever taken care of me, I apologize because sometimes I can get a little feisty)

Anyway, I also want to address my question to Gunnar about dating life.  If you have not had a chance to click on the link to Gunnar's blog (you should) but in the mean time I will paraphrase my question to him.  Basically, I wanted to know how and when to tell someone you are interested in that you have CF without scaring them away, or making it seem like you were hiding something from them.

Growing up in grade school, there were 3 families in our parish that had children with CF.  We hosted fundraisers and the community was pretty aware of who we were and everyone in my classes knew I was one of the kids with CF.  Luckily, I was not really sick, in fact, I only really missed school when I had doctor appointments and sometimes to stay at home when I had a cold or the flu- but no hospitalizations.  So I never had to say anything to anyone, because everyone knew- or if they didn't someone else in the class would tell them for me. Easy!

High school was a little different, but not too bad.  I went to Loyola where maybe ten to fifteen of us from grade school went.  In the beginning, everyone stuck with people they knew, because everyone was new and scared to branch out.  As new sports and clubs and friends were made, I did start telling people about my CF.  During my freshmen year end of first, beginning of second semester I was hospitalized for the first time ever, and it was over 3 weeks.  My teachers were very supportive and told my classes about CF and why I wasn't in class.  They were also very sweet because some teachers made the students write me cards.  I remember thinking it was weird that I had a card from someone I didn't even know yet,but I also thought it was very sweet.  Anyway, I think word got around that I had CF and it wasn't a big deal.  I came back to class, and was the exact same girl as before, only more people knew I had CF now.

College again had that new aspect to it where I would be meeting so many new people and had the option to be open about CF or closed.  Looking back, I wish I was more open.  I joined a sorority and did not tell many of them until I was in the hospital, and even then I just said I didn't feel good and couldn't make events- did not tell them I was in a hospital room on campus.  As far as dating goes though, a friend from high school introduced me to his friends and I began dating his roommate.  I told him about CF, but I think he had already known because of our mutual friend (his roommate).  Again that made it easier because it wasn't completely out of left field and because his roommate didn't make a big deal about it, just said you know she coughs and gets sick sometimes and has CF but she is still the same girl, I honestly think my boyfriend at the time handled it very well.

Flash forward to now, being 25 and going on casual dates with guys now.  My CF has also progressed (keep that in mind) so I cough more often and it sounds worse.  Also, I can't laugh anymore without coughing, or almost wheezing and gasping for air.  Although my friends are used to it by now, newcomers think I am dying.  My face turns red, I am leaning forward, coughing, gasping for a breath in between the giggles, and it sounds like Im a 90 year old smoker.  After that a coughing attack might ensue.

My favorite show (Friends) captures how I look and feel:

*Found off Google Images*

Most guys I meet are sweet about this, and say something to the effect like "oh sounds like you have a bad cold"  I play along and say yes.  But if we hit it off, and another date takes place a week or more later, that "bad cold" is still there.  I am hoping they don't think I am contagious, because I am not, but I also know this is NOT the right time to tell them about CF.

It's complicated, and I know with every person it is different.  One first date someone asked how long I had been a diabetic because they saw my pump, I thought I did a good job hiding it under my shirt, but I guess some of the wires popped out and might have given it away.  With that conversation, things got pretty "deep" quickly and I remember telling him about CF at that point as well.  At the time, I thought it seemed right and I was upfront and honest.  Ironically, this was the same person that a few months later told me he couldn't date me anymore because he needed to be with someone who had a life expectancy beyond mid 30's.  (Thanks D-bag)

Lesson learned on that one, maybe being up front and honest wasn't the best.  But I can't help it, I hate leaving pieces of my life out of conversations because CF is a part of me, and I have had so many wonderful opportunities because of it, and not sharing it feels like hiding who I really am.

So I was presented with another opportunity to be upfront and honest and I went for it again, and it paid off.  I had been on a first date with a guy and things went great.  We talked for hours after the date and then continued texting even the rest of the night.  We agreed to have our second date for the following Saturday.  I was looking forward to it, but of course Friday night rolls around and Ive got a fever and coughing blood, so to the ER I go.  Knowing very well I had an infection and would need to be admitted, I was upset about my date the next night.  I had two choices Saturday morning: 1) Tell him "Something came up, and I can't hang out tonight as planned" 2) Tell him I had CF, I got sick and need to be in the hospital for a while, but that he is welcome to come visit.
Plan 1 seemed ok, but lets be honest, it sounded like I was flaking on him last minute and I wasn't really interested in him.
Plan 2 seems extreme but showed that I wasn't lying and I did want to see him, but I really couldn't.
I went for it: I told him a little about CF and that I was in the hospital and he was welcome to come and we can get food and have our second date there.
He showed up with dinner for me and we spent the rest of the night(in the hospital) talking about everything, including a little more about CF so that he could understand some.
That was one of the best decisions I've made.  We dated for a while, but decided we are much better as friends and remain very close to this day.  (Yes, I know you read this blog, and I know you know who you are) :)

So lesson learned on that one as well.  Sometimes being truthful and honest does pay off.

I know this topic is very touchy and hard for everyone involved.  Can you imagine meeting someone and hitting it off so well but then they basically drop a bomb saying they have a chronic illness?  Not only that, but for those of you with CF or who live with some with CF, you know there is more than just the WebMD complications that go along with this disease.  We also know that looking it up on Wikipedia is the WORST thing ever!  Please tell anyone who wants to learn more about CF to ask you about it rather than looking it up, no matter how uncomfortable they might feel.

I have learned that it doesn't only apply to those with CF but other diseases, complications, or ailments that there is no standard definition.  What may be true for one person, might not be for the next, even if the disease or ailment is the exact same.  That is what is amazing and complicated about the human body.

Looking back at my original question though I respect what Gunnar did by asking some of his exs if they ever thought of him as just his disease or as himself.   The consensus is they all saw him for himself, and the CF was just something that came along for the ride.  That is the way I need to approach life.  I am who I am, and my future dates can choose to like all of me or not, but I cannot and will not change who I am.

So if any of my old dates, rendezvous', encounters, flames or anyone want to chime in on this topic, you are more then welcome to message me privately and let me know what you really thought of me in terms of CF or dating someone with a chronic illness and how you were able to look past (or weren't able to look past it). 
No hard feeling, I promise :) 

As for now, I will keep playing it by ear and find the right time to share my true story with people but I am much more open to sharing my illness and educate people on what Cystic Fibrosis is.  It is nothing to be ashamed of or upset about.  Yes, it sucks and yes I have cried and will continue to cry more than you can imagine about having it and getting sick but it has made me who I am.  I am a fighter, I am feisty, I am funny and (apparently good at alliterations) I am this way because of CF.

Bring it on!

Again, thank you Gunnar for responding to my email and opening up the world to this important topic that many of us with CF, and many others with other invisible illnesses deal with.

Thank you Gunnar

I will be adding a new blog within the next few days, but in the mean time I would like to Thank Gunnar Esiason for addressing my question in his last blog post, and introducing some of you to my blog.

Please check back soon for an update.

Thank you,

Katie

New Year, New Me!

New Year, New Me- only took until March!

At the beginning of every year, everyone makes resolutions.  For some it lasts 24 hours, others maybe 24 days, the few 240 days, and "lucky" 365 days or more.  I have figured out, its not luck that gets them there, its determination.  Of course, I started out with a few resolutions of my own.  The likely, and very unlikely.  If you know me at all you know I have already broke them all.  Hah- not because I wanted to but because I "choose" to give up.  For one reason or another, I found them too difficult.  For example, one resolution I had (quite simple in the grand scheme of things) was to keep my kitchen table clean.  I have the habit of making it a dropping ground no matter what it is.  My resolution to keep it clear lasted a week give or take (ask my roommates, Molly? Hanna? I am sure they noticed.)  Keeping a table clean should be a simple task so why only a week?  The idea of coming home from being out and immediately hanging up my coat, putting my purse away, or attending to the mail seemed so overwhelming so I left it on the table, and "would get to it later".  Haha- later never came.
I sit here three months after New Years, and my table is still full.  I have medicine bottles all over, a container of clean nebs, two books, a purse and some papers.  All of which have a place they all belong but why put them away when I can just leave them on the table and "get to it later".

Another resolution I had was to start taking my health seriously and actively fight for it.  Again after a few weeks (not to mention battling the flu, and typical winter colds) I gave up.  Doing nebs twice-four times a day, doing the Vest up to 2 hours a day, taking my pills, refilling the case, checking my blood sugar, taking insulin, wearing oxygen at night, exercising and who knows what else was overwhelming so one by one things (important) things started to drop.  Four times a day to do nebs became once, doing the Vest 2 hours a day became 24 mins, checking my blood sugar before all food or drink became only when I felt sick.  I "convinced" myself I was still doing the bare minimum and that was fine- but is it really?  One of Marriam Webster's definitions of fighting is as "a struggle for a goal or an objective".  Right away it says "struggle", not easy.  Because fighting for my life was going to be a "struggle" and not just handed to me, I gave up.  It isn't the "luck" I need to make it through my resolution, its determination.  Marriam Webster's also defines struggles as " to proceed with difficulty or with great effort."  A synonym for determination, which is "a quality that makes you continue trying to do or achieve something that is difficult."  Full circle.  Fighting for my life would be a struggle which meant it would be difficult and in order to achieve something that is difficult- I needed determination.

By maintaining the bare minimum, it was only a matter of time before I got sick again.   I know what you're thinking- "if you just did what you were supposed to, you wouldn't be in the hospital."  I wish.  I have been compliant (before) and it was only a matter of time before I got sick too.  I wish it was more black and white, just do what you're asked and you won't have any problems.  Unfortunately, that is just the nature of the disease.  It does what it wants.  I have had procedures which are supposed to stop the bleeding in my lungs and allow me to breath without coughing up blood.   Not even 10 days after the procedure, guess what came back?  I hadn't even had a chance to "mess" that up.  I was still in the hospital under doctors care where they were taking care of me and I was compliant.  But again the demon of the disease has its own agenda and does what it wants- no matter how much you cooperate.  Granted, all the advances in medicine and all the therapies and drugs they want me to take are the reason the median age of adults living with Cystic Fibrosis has risen to 37.  But unfortunately there are cases where you can do everything that is asked of you and the disease still wins.

I know I have a lot of room for improvement and have a chance to "have a normal life" but in reality it will never be "normal"  First, age 37- that sounds amazing in the world of CF but think about it for a minute.  37.  For those of you who are my age, I bet you can't even remember when you're parents were 37 because it was so long ago.  (No offense parents that are reading)  Now a days life doesn't even begin until later.  I mean that compared to previous years.  People are going to school longer, waiting longer to get married or have kids.  "You only live once" Make the most of it, why rush it. Savor every minute.  In 2013, the average age of death in the US was around 81 for women.   (Again anyone who knows me, knows I can't do math but) That is MORE then less of half of a life.  -56% to be exact (thanks James) 56% less of a life then the average person around me.  Yes, we should celebrate the HUGE progression modern medicine has made in the past 20 years but its hard to fight and find that determination when you feel like you are being cheated out on so much to begin with.  Even if I gave 100% of fight and determination to fight CF and everything along with it, at best I have "half" a life.  Yes, life is what you make it.  Yes, there is nothing better then a good hardly laugh  (everyone knows I am capable of that) and the feeling of being on Cloud 9, but in the back of my mine the number 37 is always there.  I know statistics are just numbers but for me they have always been the elephant in the room.  Growing up when friends asked how do you handle CF and knowing you have an age limit, I always used to say I don't think about it.  I also would say I might have one, but you don't know yours.  Not to be dramatic but you never know what tomorrow brings and if you will pull a "Regina George" and get hit by a bus.  Life is not guaranteed.  In all honesty though, I thought about it.  At age 12 though, anyone in their 30's seem old.  As I got into my teens, 30's were still far off but I often thought I am at the half way point.  25 years old, and reality starts to set in.  Yes, the average age increases with every new therapy or drug that gets approved but without a cure the elephant in the room remains.

The advances in modern medicine are amazing.  I have seen friends who were gasping for air, hooked up to oxygen day after day, wake up the next day breathing on their own for the first time in years.  Transplant has made that possible.  Taking a donor's healthy lungs and replacing the scared, mucus, infected lungs of a CFer gives them a new lease on life.  Transplant isn't a cure or a fix.  Problems often follow in a new way.  Transplants are difficult and are a struggle and it takes A LOT of determination to get through them.  Something I will be challenged with again (if I choose to go down that path).

OK so enough on my philosophies on life- where is my health at now?   Ironically, I have some of the highest PFT (breathing tests) numbers I have had in a while.   To put it in perspective I am around 62% lung capacity for someone my age/height.  62!!! Beat that CF, (and my doctors)  If I was to go to a lung transplant center right now with those numbers, I am pretty sure they would laugh at me and say you must be joking if you think you need a transplant now.   While that is just a theory based on my PFT, there are other things that are being considered that might not be so transparent.  I still have a rather sizable hole or rather cavity in my lung.  I am only a week off antibiotics and already coughing blood again.  I notice my oxygen saturation drops significantly at night, and sometimes during the day with any type of walking or activity.  I have a higher heart rate then normal- assuming because my body is working harder to get the oxygen it needs.   My diabetes is alright.  By standards, it isn't good- but it is controlled.  My liver is still scared(liver cirrhosis) and will eventually stop working.  Not exactly the picture of perfect health by any means- but also not exactly at the transplant stage either.



I have spent the past couple months freaking out about deciding what to do with the rest of my life and how to handle it. Why?  I caused myself sleeping problems, anxiety, panic attacks, nightmares, you name it.  All because I was told I  "need to start thinking and looking into transplant".  I respect my doctors and their opinions and I know they know better then me- that is their profession.  They spent their lives studying this disease and trying to learn the ins and outs of it but in all respect, I don't care right now.  I need to live my life.  I need to live without fear, without anxiety, and without the "threat" of transplant.  I know it is life saving, and life changing.  I am not there yet.  My diseased, hurting, scarred lungs are still putting up a fight- I need to listen to them and fight with, not against.

I am listening to my body now.  Right now, it says fight.  Yes, it may get difficult or challenging at times but I want to win.   I fight, I always have.  In grade school I fought the teachers on little technicalities. (Brigid and Bea can attest to that)  I argued with them because I could.  I had something in me that wanted the world to know I will not take a back seat in life.  I am a fighter.  This past hospital stay I fought again.  Not only for my health but for legal rights that were violated.  I fought because I could.  Again, I did not like the feeling of sitting in the back seat and having no control.  So I fought, and I won. That spark is back.  That feeling of winning is there, my new form of determination.  As I went into the hospital this past admission I wrote, " I may have lost this battle, but certainly still fighting the war."  Well, guess what?  The fight, has just begun!



Thanks Lisi for sharing with me a great song- it is the perfect song for not only CFers but everyone.
"I, I did it all I, I did it all 
I owned every second that this world could give
I saw so many places the things that I did
With of every broken bone, I swear I lived"

"Grass is Always Greener on the Other Side"

It seems like Thanksgiving was months ago, not weeks.  Maybe time is going by slower for me because being unemployed is starting to get to me.

Granted everyone hates "the Mondays" but when you don't get to experience them anymore its almost worse.  Yes, even when I was working "the Mondays" would hit me occasionally but most of the time, if I wasn't sick, I enjoyed waking up, getting dressed for work and heading out the door.  I think back to working last year and even in the dead of winter (which was brutal last year) I loved that feeling of going to work.  Call me crazy, but maybe I knew working would only last so long.  Also, growing up my dad always said, "Do something you enjoy and then you will feel like you never worked a day in your life."  Most people know those who are involved in working at a non-profit, work for the love of it, not for the paycheck.  For me it was certainly that.  Although there were some days were I said I don't want to do this the rest of my life (prospect research), I'd rather be involved with talking to donors more- it was all a stepping stone.   I tried for 9 months to "be normal" and work.  I could only handle part-time, and even then it was too much sometimes.  CF got the best of me 4 or 5 times during those 9 months and unfortunately put me out of work for upwards of a month one time.  Most of the time, a week or two.  I was very lucky to work for such an incredible company, and bosses who understood CF and allowed me the time I needed for a proper recovery.  Obviously in the end it didn't work out, or I'd like to think I would still be there, but I was very fortunate for the experience.   While I was working, I liked to do my best.  Of course there were times I wasn't feeling good and just went through my work until it was over and I could go home and snuggle in bed, but the days I felt good, I tried.  I loved dressing up- wearing dresses/skirts, heels, jewelry, make-up the whole nine yards.

Ideally, I would like to find another part-time job but I know it is probably best that I focus on my health.  Doing the Vest, and nebulizers 2-3 times a day adds up.  I know if I worked I would cut them out and essentially let my health go.  Sleep is hard to come by as well, causing me to either nap at weird times during the day or not at all.  I will sleep for a few hours at night if I'm lucky, but ultimately wake up coughing or gasping for air.  The blood continues as well, although its been manageable not more then a few ounces or tablespoons.  Although it usually comes with pain.  Sometimes are better then others.  There have been nights where I lie in bed where every breath in or out hurts.  I try not to move and just hope I will be able to fall asleep and forget about the pain but sometimes the sharpness is too much.  There is nothing to do about that other then just hope it goes away.  If I feel up for it, I drag my tired body out of bed and into the living room to do another round of the Vest.  The pressure of it, squeezing your ribs, is almost soothing.  It also helps if I am having a coughing fit.  I don't think the Vest itself does much, but sitting up and not laying helps.

Without sleep my body quickly drains and I have pushed it to the limit many times.  I tried a full time job, well really it was part-time but I worked 43 hours that week and then around 38 the following.  Of course, by the third week I was in the hospital.  I was asked to help out and work more hours and of course I said yes.  It was a good experience for me because I had convinced myself I would be able to handle full-time.  43 hours is typical for a full-time job, and for me I was exhausted.  I was so happy to see what it was like and "complain" to friends about how I was on my 3rd cup of coffee because I was tired but it wasn't even that kinda tired, my body was literally aching.  I loved taking the el though and being surrounded with people my age going downtown for work.  I loved that feeling of coming home at the end of the day and feeling accomplished.

People would love to be able to stay home and not work but its nothing to brag about.  I feel like a debt to society.  Luckily, I still look young so people assume I am in school still as I walk around Jewel mid-day grocery shopping, or read a book at Barnes and Noble.  I think I would feel more self-conscious if I looked older and did nothing with my day.  I know I shouldn't care what other people think, but I do.  I worry that because I don't have a job, or am in school I just fail society.   Growing up when anyone asked what I wanted to be, I fiercely proclaimed a lawyer or judge.   I never pictured unemployed in that dream.  I still dream of being a lawyer or judge, but its more of a wish then reality.  Yes, I graduated college with honors but it took 5 years, 2 schools, and countless hospital stays.  Most of my courses, toward the end, were primary lecture but assessments were on papers related to the topics.  I was able to do the readings on my own and able to catch up when it was more convenient for me.   I know law school is also primary lecture, however your assessments are what was given in class.  I am sure reading the material on your own would help but it would be really hard to pass while not actually attending class.

Which brings me back to transplant talk.  Obviously it has been on my mind all month long.  I've thought more about it, and researched more.  I am slowly, and I mean slowly opening up to the idea of it.  The complications and risks still exist and worry me but the gift it gives is worth it- life.   It is still not known if I make a good candidate for transplant and if a center will list me but it is a conversation I am willing to have.