If there is any quote that can probably sum up the past few months it would probably be from one of my favorite shows, the Office (the original BBC version).

"It's important to remember that some days you're the pigeon, and other days you're the statue." I think that is a pretty good parallel, lol .

I can't remember being off IV for more than a month since November. The doctor just keeps throwing me on and hoping for the best. I think that sometimes people who aren't a CF caregiver or a CFer have a hard time recognizing the little struggles daily that we do without question. By the end of the month I have used up all my sick time at work and dip into vacation or personal time, and it's a bummer, but at the end of the month I'm proud that I got there at all. I can't even begin to add up how many people have asked me what my port is, or asked me how many months pregnant I am, lol, and although those things bother the hell out of me when they happen, I don't think I can picture my life without CF in it. I don't know who I would have turned out to be if I didn't have these personal struggles. So I guess that a good way to try to get through each day is trying to find a balance. For every sick day, there is a proud moment.

Life is a period of ordinary moments speckled with extraordinary ones. It's rough to mentally pull yourself through the ordinary, and extraordinary moments come too far and few in between. But I suppose the balance does work if you seek out those little moments every day that can make you smile. I think sometimes people expect you to be depressed all the time. That's actually one of the comments I get most of all, as I'm sure many of you do too. "oh gosh, I don't know how you do it, I'd be depressed and in bed if I was that sick". I don't think a lot of people expect you to try to smile each day even though that may be the biggest challenge.

My puppy, Ivy, makes my day. She is the epitome of unconditional love. She sits next to me when I'm crying. She sits next to me when I'm laughing. She just sits and stares and loves no matter what. I don't try to sugarcoat CF anymore. If anyone knows me, they know that I am a pretty realistic thinker. It helps me not to give up, and understand lessons in life that often go hidden, even if they hurt sometimes.

I haven't posted a lot lately, mostly random questions. Even though I've been going through the hardest time that I've ever had with this illness right now (currently fending off a partial collapsed lung), I just want everyone to know that I'm ok. I pull myself to work everyday and take time to relax with friends. I'm trying to live my life in the face of this darkness. I take my time to cry, I take my time to smile, I'm just rolling with it. After all, that's all we can really do. And as always I'll end with a quote...

"It's time to try defying gravity..."

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Kristen 25/F w/ CF dx at 4 months old, cfrd "But tomorrow may rain so, I'll follow the sun"

Oh sweet kristen,
You are going through so much . It make's me so sad , but, you are so strong, and wise beyond your years. I'm so glad you are so honest with the way you feel. I wish I could take all your tears away. I love you talking about your puppy. The power of a pet, love unconditionally. I believe they know exactly how you feel also.

Try not to let it upset you about your port or their weird questions ,sweetie. I think some people don't know what to say. Maybe it's better they say something than nothing at all, and you can teach them about CF.

I am praying , and will have to have that special talk to God , about getting you well,Soon! I know you said your living your life in the face of this darkness, and that is true, and that Sun had better come out soon. I know you are My Hero, and you will fight this freaking disease. We are all here for you, and I know you are always here for me.
Luv ya much , karla

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Karla,Nana to,'THE LOVE OF MY LIFE', Makailyn,now 8,diagnoised @2.5yrs w/CF,Gene Mutations DF508 & T1036I(rare)Pseudo&Staph since diagnoised,Pancreatic Insufficient,Asthma,Sinus,HIB,Rhizopuz,Hx RSV@age3.5yrs, Enterobactor Clocae,Alcaligenes, Achromabacter Xylosoxican,and now serious Pancreatitis problems,ect,ect,Well we all know!!!

Kris, I feel your pain. I too have had antibiotics so often this last year it is surreal. I only wish they were doing the trick. It's wonderful that you are sharing your experience and how you feel with your friends, family and co-workers. Whether you know it or not, you are being a messanger and helping people be more Godly, compassionate, understanding and less self centered. I'm sure more people than you can count, think of you at all different times and your spirit, nature and way gives them hope and encouragement for their challenges. Perhaps when someone says ' oh Kris, I don't know how you do it.' or a variation of that saying. You could ask them to send you a little message about how your situation inspires and motivates them. You can admit that some days you need a little encouragement yourself and having it to read would be therapeutic. I have a few of these types of emails that make me feel better than any drug. Where is your lung function? After the lung collapse gets better is it possible to start the eval process. Not that you are ready to qualify, but just so you get all the tests done while you are still feeling quite well ya know. Glad you have your pup. hugs, Lauren

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Lauren 31, G551D and DF508, MDRPA & MRSA
3 year old son with S1235R and G551D

8 more weeks until I get V770 open label!

It sounds like you are well on your way to finding that balance. I hope you'll reach out to us when you need someone to lean on. No matter how strong we are, sometimes we need a shoulder. ((((hugs))))

Stacey

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Wife to David, Mom to Jordan 19 w/cf, Bronson 22 carrier & Mason 14 no cf

I think everyone with CF should read this entry. It's pretty powerful and inspiring.

I'm so sorry things have been so rough for you this year. But you're a fighter. Your attitude is so incredibly inspiring.
I completely agree too that we learn to acknowledge that what we go through is a feat and that we learn to take pride from it.

Keeping you in my thoughts.

<3 Ayn

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I'm Ayn, a 22 year old female with CF.
current lung function in between 50% -60%
Double mutation of Delta508