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"