Too much for anybody to handle.

I know I have not written in a while, and I think I really need to start writing more to cleanse my mind.

This last week has been pretty rough for me.  My friend lost her life long battle to CF yesterday.  She declined pretty quickly and most people did not see this coming.

On top of that, a very good friend of mine and my first boyfriend and first kiss is losing his battle with CF.  He has been suffering for a long time and is slowly dying, which is the hardest thing to accept.

Having friends die is not the hard part for me, it is the suffering that I see them go through.  Getting to that point of being so weak and feel like they are drowning is so hard to think about.  It is especially hard to think about because I deal with the same disease.  As much as I say this disease is a blessing, I also think it is the devil.  No one should have to suffer and slowly die like this.  I know people die at all ages and even though that is hard, the hardest part is the slow suffering that makes me cringe.  

As much as I go through my daily life like go shopping with my mom, go on a walk, and make dinner, I can't stop thinking about these people.  If I sit around and sulk it will just be that much harder, but I question how can I do anything normal after such sad news.  How can the world keep going round?  You will always hear the same things...it is what we should do, or they would want to keep going.  Unfortunately, the world does not stop for anybody.  

I made a passing comment to my brother tonight that my friend was not doing well and that he will probably pass soon, and he seemed a bit shocked, but our conversation went on.  My parents finally went to bed and I was still up doing my treatment, and all of a sudden my brother came running out into the living room and was balling.  He practically collapsed into my arms.  He told me in between sobs and heavy breathing, he is scared for our friend.  I told him this is not the place for him anymore and his suffering needs to end.  My brother is not a sentimental person in most respects and I can only imagine he was holding in those tears since I told him the sad news hours prior.  I can't imagine what my brother goes through being the "healthy" sibling.  I know he doesn't think about me all the time, and it would be selfish if I did think that.  But in these times I am sure he is scared of what will happen to me, and I hate that this disease is hurting his life as well.

It has been a tough week and I can only imagine it is going to get even tougher.

I hope everyone is enjoying the beginning of Spring and that you out there are not going through such difficult things right now.

Give your loved ones a hug and be thankful they are still with you.

~Maggie

Cold, Hot, Rain, Snow, Sun, Wintery Mix...up and down and all around!

What does my title have to do with me?  Well, welcome to Chicago, Illinois and my life. 

Lets tackle the weather first!  Everything I described in the title is basically what our weather has been like for the past two weeks.  Maybe it has not been hot, but to Chicagoans standards in the winter, 58 degrees is certainly a heat wave.  We have dealt with whipping cold weather, an over abundance of snow, and even massive flooding.  Chicago's weather is as dramatic as some people's lives.  

Speaking of drama, how about that awesome Govorner of ours?  Talk about up and down and all around.  He is really off is rocker, and is bringing unnecessary drama to this wonerful Land of Lincoln!  Blago is definitely keeping the news interesting during the Holidays this season, especially with appointing a senator in place of Obama.  Really Blago?  Is this the way you are going to play the game?  I can honestly say I am glad my life is not that dramatic these days!

We can start where I left off.  I got out of the hospital to finish a week of ivs on my own.  To my dismay my lungs did not improve at all.  I can't even say they improved a bit because my breathing test showed the same numbers when I went into the hospital as they did when I came out of the hospital.  A little dissapointing, but not something that was going to ruin my holiday fun!  I am glad to report Christmas went pretty smoothly, and having family around has been fun and challenging.  I meant this in the nicest way possible.  It can be stressful with extra guests around and sometimes my schedule can sometimes be altered, which doesn't seem to go well with my cf.  Unfortunately cf like to have a schedule and a routine and a plan.  Does that mean I can't do things that are not part of my schedule...no.  It just means that I need to plan for those other things.  Spontinaiety does not always fit well with a plan.  Of course with every plan there is a back up plan for the times when things come up suddenly.  What does this have to do with the title you ask?  My life can be a wintery mix.  It does not mean drama, it just means that a lot of things can happen at once.  

I'm sorry, I did not define wintery mix to those of you who live in warm places.  Wintery Mix: A combination of snow, sleet, and rain falling at the same time.

For example, I just got a nasty cold yesterday, and that can knock me on my butt for a couple days to a week before I can really start functioning normally again.  On top of the cold I am going back to my condo in the city, which means packing up a lot of stuff that I have brought to my parents house, and on top of that I start classes next Monday, which means a little preperation with that.  And we can't forget balancing the dating scene.  It sounds like a chore, but everyone knows it can be a little difficult figuring out eachother and how we mesh and fitting a new person into your life.  It sounds depressing, but I do enjoy dating and doing things with a person, and sharing my life with a person.  No drama, just a wintery mix.

I am hoping the wintery mix will stop outside soon, but I know winter has just started here.  I will enjoy the indoors, hopefully with a new boy, and start my new hobby...improv classes.  It will keep me busy one night a week which will be good for the winter blues!

I hope everyone is have a good holiday season and a Happy New Year!  I hope you find Peace, Joy and Love in your life, and most importantly, I hope everyone stays healthy this season and all year long!

Controlling the uncontrollable

I know it has been a long time, but since this blog is for me and I am sure no one reads it, I think it is okay that I have not written in a while.

I am once again in the hospital, but I am okay with it and figured it was a good time to come in during my winter break.

The First day of a hospital stay is always the most nerve racking, busy, and exhausting day of the stay.  I was struggling more than usual with this first day.  It started off okay with people poking into say hi, it quickly went down hill when I had 2 residents and 1 med student come in on 3 seperate occasions to get my history.  They are usually smart and all come in at once, or at least ask me different questions when each comes in.  

As the afternoon rolled on I was hearing of meds being ordered wrong, or not at all.  I fly off the handle when meds don't get ordered correctly.  As my mom walked across the street to grab us dinner, I was on the verge of a break down.  One more little mistake was going to throw me off the deep end.  I kept myself busy while she was gone, and managed to get through the day without a melt down.

It dawned on me this evening why I was so on edge today. The control I have over my disease was taken away from me.  It is like changing of the guard, and maybe next time I should have a cermony and give my inatament control over to the residents.  I should explain to them what it means to give my full control of my disease to them.  What it feels like to talk to 5 different people before you get the right med from pharmacy, or not being able to talk to pharmacy directly.  Yes, I could be a pain and start requesting to talk to pharmacy directly, but that would put more stress on me, and less time to recover from my lung infection.

There is little I can control of my disease, but I can decide on the pills I take, the times I do my treatments, the times I do my ivs, and not be on anybody elses clock.  It is hard to request times for such things when they have a million other patients to take care of.

So now that I have realized my problem, I need to learn how to fix or at least "control" it.  But that brings up a good question.  If I just handed all of my control over to the docs, how do I have control over anything, including my emotions.  Everything that comes with the word control seems to be handed over.  This is where the compassion comes in, and the surrendering to the process, and biting my tongue A LOT!  

I should realize the docs have a lot to do, and they still are in training and do make mistakes.  But that brings up a question in my mind.  How can I trust someone who learned about Cf in a classroom, and just started practicing on us 2 weeks prior to my admission?  How can I let them make decisions when they have not grown up with this disease, but only learned it about it in a text book a few years prior?  How can a doctor know things about my disease when they have only had less than a decade of training?  But then again, it is a job just like anything else.  You become an expert in your field of training.  

Now this seems to be going in circles, and I don't seem to be getting answers.  I guess the only thing I can do until I come up with answers is to surrender to the process (best advice ever given to me) and see where that takes me.

Sorry for the long post.  I had a lot of pondering questions.  Hope all is well!

~Mags

DK...the love of my life.

Dear DK,

 Your humble approach to your disease amazes me every day.  You take it in stride with every ache and pain that shoots through your body.  We might have only met three years ago, but you instill in me what I could never have done on my own.  You give me strength to keep going, and the drive to go on fighting.  Your stories frustrate me, when hearing the doctors have no answers.  This is not the way it is supposed to happen, and who ever said it was okay to live with pain?  I will never feel your pain and I will never actually live your journey, but I empathize (something I know you wouldn't want anyway to do) but I can't help but hurt for you.  You take every blow with such ease and I admire you for it.  I ask you though, please yell, please scream, please cry.  What is going on with your body is not fair and no answers is not right.  Yell, from the top of the Sears Tower how frustrating it is to not know what is going on.  I will yell and swear for you.  I hate to see you show your pain because that is when I know it hurts the most.  Your emotional pain must be far greater than your physical pain and I can't imagine how difficult that truly is.  I will lay in bed with you and cry for you, cry with you, or be silent and stare at the wall with you.  You mean everything to me, and going through college with you has made me all the more sane.  You have kept my spirits up and showed me that we can do everything and still deal with our illness'.  We deal with our diseases differently emotionally, and physically, but we support eachother just the same.  I want you to talk to me when you can and I want you to let it out...it is good for you.  I love you with all of my heart and I thank you for stumbling into my life.  You are my rock and you are my fellow DK.  I love you.

~Your Fellow DK

Confidence comes from within...

Somewhere in the last year I lost my perspective on where confidence comes from.  I seemed to be dishing out advice to my friends about confidence, but forgot to listen to myself.  For some reason I was looking for confidence in all the wrong places...from other people.  Walking into my first year of college I had confidence and that confidence helped me make the wonderful friends I have today.  Somewhere along the way I was gaining "fake confidence."  When I say fake confidence I mean sucking up the attention people were giving me and mistaking that for confidence.  I look back now, and I realize I have not made as many friends as I did back in my freshman year.  

It struck me tonight as I was sitting around waiting for a phone call, that I knew would never come from a certain person, I realized I needed my confidence back to be content with me being alone.  And when I say alone that does not just mean without a signifcant other, but it means that I am truly alone, no friends, no family, no roommate in sight, and I just need to be confident with me alone.  I am ready to go back to my old ways of being confident without anybody else's help.  I will never be alone in the fact that I will never be without a support system, but my support system can not give me my confidence anymore.  I need to find my own confidence and strength from within, that is when I will be at my happiest.

This confidence does not mean I will be some person with my nose turned up around others, but it will keep me better in tuned with my friends, family and loved ones.  I will be a better person for not only myself, but for the people around me.  

Confidence here I come!

Fall!

In chicago, Fall seems to be right around the corner.  I have brought out the jeans and the sweatshirts already as so many other people have.  Fall can be beautiful if it is not rainy or too cold.  The leaves change colors and it can be a beautiful sight.

My friend Eric and I were talking tonight and he told me how much he likes fall.  I started getting pouty about it and said how much I was sad the summer was ending.  But later as I contemplated by anger towards a new season, I realized it was just my anger towards change.  I hate change most of the time because I see it as bad.  But change can be enlightening once and a while.

This Fall I am ready for change...I am ready to move on from the dog days of summer and fall into the new school year, new friends, and interesting times.

I hope that everyone out there can embrace the change of Fall and get ready for whatever comes their way.  

The Balancing Act.

I have heard all my life..."it's a balance".  Work and play, life and death, friends and family.  My life is one big balance, and lately I have been playing the balancing act more than ever.  I don't even know if I am being myself anymore.  Cf is a hard subject to balance especially.  When do you share about your disease to someone?  When do you share the gross things about your disease?  When do you share your fears about your disease?  All questions I could ask my cf friends, but each will have a different answer and each will tell me that it is when it feels right.  I know all of that stuff, but it truly is a balancing act of when, how, and what will you tell someone close to you about all of this.  I think I have been so in my head about it that I have been trying so hard to balance not worrying about it, to totally freaking out about it.  There is never a good time to tell someone that you won't be able to have kids, or you cough up copious amounts of mucus each day which makes me want to even get out of my body some days,  or that you never get privacy in the hospital, or an oxygen tank following me could be closer than it seems to being a reality.

Balancing to look normal, and make sure a person knows exactly what they are getting into is so hard it can make me sick to my stomach.  It never used to seem so hard, and I used to be so confident about it, but I feel the more insecure I get with myself and my disease, it is that much harder to let someone into the ugliness of cf.

There is so much more to balance than just cf...normal life things.  When do I need to live with no worries, and when do I need to live with all of the worries in the world?  

No one can give you the perfect formula for balancing, nor do I want it.  It is a guessing game and a good one at that.  For now I will have to see where life takes me and be content with what I find...I will let you know how it goes!