My Life Through a Lens

I got everything done early tonight. Nebs, inhalers, vest, pills, and even some nagging household chores... and now I can't get to sleep. So, I think I'll take this temporary insomnia as an opportunity to post some pictures I've been collecting especially for this blog. The following are some snapshots from my life as of late, some are CF related and others aren't. I guess I'm just feeling artsy, expressive and such.

My P.M. pills... on top of my lab orders.

Vest + Nebs = Treatment Time!

This has to be the best picture ever. Makes me laugh every time.

My dog, Max, hilariously lounging.

My current Facebook photo. Cheese!

Starbucks. Taken while chatting over coffee with Kelly.

New Year's Eve with my new cousin Karissa!

Karissa and I again on New Year's Eve. We know how to party!

Identity Crisis

Usually I try to keep my life in neat little compartments, the two biggest sections being my CF life and my "normal" life. This all started when I was diagnosed with CF right smack dab in the middle of middle school, the summer between 7th and 8th grade to be exact. At 13 years old, I was afraid of damaging my mildly popular junior high reputation and scaring off the cute boys so I decided to keep my diagnosis to myself. I didn't tell anyone I had CF, outside of family and close family friends, until my senior year of high school when I told my best friend of eight years. Two months later her and I lost contact completely. Whether that was because of CF or something else entirely I have no idea but it is awful coincidental. We haven't spoken in almost three years. This along with the whole fatal disease stigma has left me pretty gun shy about sharing my CF. Not because I want to appear normal, I'm fully aware that "normal" is just another word for boring, but because I'm afraid people will decide it's too much. Too much to handle, too much to talk about, too much pressure, too much too soon. I've never had someone abandon me because of CF or even appear to be deterred by it (besides my high school BFF) but the fear still sticks with me.

When I got out of high school and away from my high school friends I started noticing I was opening up about my CF more and more to friends, family, and even people I had just met. I think CF became more real to me after high school when I was left to make life decisions about a life I wasn't sure I would always be healthy enough to lead. Scary stuff. I like who I am now in that respect, I don't mind talking about CF, I actually enjoy it sometimes. It is such a major part of me and I spend a lot of time keeping myself alive, I deserve to talk about it sometimes. I wish 20 year old me could tell 13 year old me that.

I bring this all up because lately I've found myself pulling away from my old friends and isolating myself from "normal" me's friends and instead only seeking out interaction with CF me's friends. I find that I want to share everything about my life and not just a part of it. Maybe CF is becoming more and more a part of my life... Either way, I feel that if people don't know about my CF then there is no way they can really know me. I was at work today when my high school prom date sauntered in to have dinner with his dad. I say sauntered because he was stinking adorable and I was a little twitterpated. Mhm. He immediately asked if I was working and when I finally worked up the courage to leave my kitchen safe haven and visit his table I felt like I was looking for who to be around him. Which me was I supposed to be? I've known this guy for a pretty long time, we met in middle school and went to church and on several mission trips together, I'd like to think that we will always be pretty good friends. The fact that I felt like a different person around him really unnerved me. I forgot how much I hated "normal" me, CF me is way cooler. He hadn't changed in the years since we last talked in person, I had.

I've read artices, lots of articles, and I know that as CF patients get older and closer to life-changing sicknesses they take a hold of their care and take a real active interest in their illness. Well tah dah, guilty as charged. I just don't know how to undo the past, how to rewrite who I am to my past friends like I am so desperately craving to do. I've taken baby steps, like joining several CF groups on Facebook and even adding my diagnosis to my Facebook bio. This blog was even a baby step in it's own special way. Maybe these little steps will lead me to somewhere... but there's still the fear and general anxiety. Will they think it's too much? Will it scare them away? What if they think CF is gross or weird? Cause it kinda is.

I would love to share this blog with all of my 238 Facebook friends and bring awareness to both this disease and my constant struggle with it. As of now I've only given the link to five or six friends and family members, people who know about my disease and have stuck by my side always (hey reader, that's YOU!).

So here I am, having a full scale identity crisis at 20. Better now than at 40 I guess. I hope that someday I feel comfortable enough to share this, all of this, with both my old and new friends because I think CF me is pretty awesome and I'm proud of who I am today.

Let's Get Clinical!

Hey there, reader. How are ya? This past week has been a little crazy with a capital "C" but things are calming down now, and for that I am so thankful. Between helping out at my family's restaurant, doing treatments, taking meds and basic hygiene I flop into bed every night completely spent. Anyways, enough whining, let me tell y'all the good news. Drum roll...

My CF clinic visit was last Friday and it went FANTASTIC! My lung function is sitting pretty at 104%, that's right, one hundred and four percent! My appointment lasted for three hours and I don't know if I have ever felt so at ease with my care team. Everything was just great. I am in love with my new doctor! He is everything I am looking for as an adult with CF; organized, articulate, understanding, and determined. My doc did order a new and more advanced sputum culture to check the antibiotic levels and resistances in my lungs. That test will decide where my care plan goes from here and the results should be back in 4-6 weeks, which is when I will be at the CF clinic again. AND I didn't even get in trouble for my weight loss. I was really surprised considering I'd lost another two pounds, but my nutritionist reassures me that my BMI is still perfect so she has no qualms at this point. I couldn't help but feel like I dodged a bullet there!

So that's that. I'm healthy as a horse! Not really, but in CF terms I'm doing pretty great and I feel really good these days. It's nice to feel normal.

An Update For the Sake of Updating

At a family dinner tonight I was informed that I don't update my blog nearly as much as I should. I agree. My excuse? Writing down what is happening in my life sometimes seems like the most stressful thing in the whole wide world. Silly, I know, but sometimes it cripples my little typing fingers. So that's my story. Sorry to my sweet cousin M who checks out my little bliggity blog often; I'll try to write more. Like now...

Tonight I have nothing pressing or exciting to report. The start of this month (a Tobi month) brought a total of four antibiotics to my system. Tobi months are never easy but the addition of a fourth antibiotic really made it tough. As of last night I'm back down to two, a little more manageable. YAY is all I can say.

I do want to mention how thankful I am for my sweet family. Specifically, those who attended a fundraiser last night for a fellow CFer. My Cyster, Tabitha, is dealing with end stage CF and therefore has started raising money for a double lung transplant. I am unable to attend any of her fundraisers since CFers can't be together without creating a bacterial swap meet. It makes me sad that I wasn't there for my friend but the fact that my cousins and uncle were there makes me feel a gazillion times better.

What's on the agenda this week? CF CLINIC of course! Friday, February 17th to be exact. Pretty exciting business if you ask me. I've been feeling really, really great lately. My only concern is my weight. :/ It is very important for CFers to maintain their weight at all times. Let me say that again, it is very important for CFers to maintain their weight at all times. Weight loss not only draws concerned looks and lectures from your doctors, it also indicates disease progression or exacerbations. Neither of which will earn you any brownie points. My usual weight at my doctor's office is 140-143 and my CF doc is very happy with that number. When I went to the office in December I only weighed 136. *Gasp* I got a skeptical look and was told that if I don't gain back those pounds over the holidays we would have to do something. Like I said, I feel great so I can hope that the all-knowing scale reflects that.

I wish all of my sweet, supportive friends and family a fantastic week and a Happy Valentine's day!

X-Ray Vision

Whenever I go to get x-rays I always walk out thinking I know how to read them. False. So so so false. Last time I tried to read my chest x-rays I thought the large mass in my left lung was some awful infection... nope, just my heart. Of course, I worried about it for two whole weeks up until I saw my doctor. You think I would have learned my lesson, right? Once again, false.

Today I went to get a chest x-ray. I brought the films home with me so I can make sure they get to the CF clinic with me for my February 17th appointment. At first I swore off any peeking at the films considering my last attempt. That oath lasted all of 32 seconds. The first thing I saw when I peeked was my port, this being the first time I'd seen it on x-ray, and i was surprised by how strange and alien it looks inside me! That was a weird moment for me. I think my lungs look about the same as they did last time we x-rayed... I think. I always get nervous when I see "cob webs" in my lungs (my doctor's words, not mine), a.k.a. the foggy, murky, web-like stuff. I can never tell if it means scaring, infection, or just plain bronchial tubes. We shall see!

I don't know how to read these x-rays, that much is obvious, but I do love looking at them. I can only hope that my doctor shares the sentiment when I see him next week.

Any radiologists out there? Here's an exclusive look at my lungs for my awesome readers!

Retail Therapy

One perk of two hour treatments twice a day is lots of "me time". Another far superior perk is plenty of time to shop online! You all know that I tend to blog and treatment but during the holidays I knock out almost all of my gift list while on my nebulizer and vest. Glamorous, huh?

This month just happens to be a Tobi month. Usually I would whine and whine and whine about this but I'm actually secretly rejoicing in the fact that my treatments are significantly longer this December. No one can bug you or demand your attention when you're busy saving your own life, leaving me two solid hours of power searching, shopping, and shipping. Who can argue with that? I'll still whine about Tobi a little. Can't let that antibiotic think I welcome it's nastiness. I do appreciate it's effectiveness, though.

Happy holiday shopping to all of my sweet family and friends!

When Good Blogs Go Bad...

Things get moved around, apparently. There is supposed to be a column with the months and dates of all my little postings right over thataway -->. As you can see, it is not there; instead, said cutesy column with important stuff is down at the very bottom of this page. Why, you may ask, has it relocated to such a ridiculous place? To annoy me, or punish me for neglecting it these past few months. Either way, I can't figure out how to fix it and it's annoying the heck out of me. Really, I had nightmares about this stupid, stubborn column. This explanation had to be written for two reasons: 1) so you folks don't think I did this on purpose or just to annoy you as my blog did to me, and 2) just to vent because it's bugging me that much.

A word to the wise: don't neglect your blogs people, they get cranky.