Who of you by worrying can add a single hour to his life? Since you cannot do this very little thing, why do you worry about the rest? Luke 12:25-26

Tuesday, September 29, 2009

Don't make me laugh... my abs hurt...

My facebook status yesterday was:

isn't it funny how a mile doesn't feel like a mile when you're running with a friend talking about the good ole days?

God answers prayers, my friends. As of late, I've been struggling with the fact that this great athlete (me) now can't walk up a flight of stairs without getting winded. That dramatic drop in breathing ability happened over just a few short months and took me by surprise. I ignored it. I told myself I was still the great athlete that I've always been. Occasionally, reality would hit me and I would cry. I have pride issues in some areas of my life, and this one was going to shorten my life if I didn't get a hold of it. The boyfriend would beg me to go workout with him and a friend of his, but I would always turn him down. "I can't. And I can't handle the fact that I can't. So I won't."

The other day I knew enough was enough. So I got the number of the oh-so-famous Ronnie Sharpe (see his RunSickboyRun blog here). Ronnie, to sum up, is a guy with CF who took control of his life by lots of exercise and discipline. I knew that if anyone could help me, he could. Even though I got his voicemail, just calling helped me because by calling him, I knew I actually wanted to help myself. So I did.

Last night I went to the campus gym with the boyfriend and his friend. Now, I really really really don't like running. But I knew it was the best thing. So I walk up the stairs to the indoor track and right as I'm about to run.... I hear a familiar voice. "Hey Annie!" Already on the track is a who I have known literally my entire life and have played soccer with her almost my entire soccer career. We started together on my mom's soccer team in the 4-year-old's league and ended up crying together when we lost in playoffs during her senior year (my junior year) of high school soccer. So seeing her on the track when I got there and her asking if I wanted to run with her, I knew God had answered my prayers.

As much as I don't like running, multiply that by 10 and that's how much I don't like running by myself. We took a walking lap around the track to stretch out my legs and then we ran. How far? Not sure. I do know it was over a mile though. After she left, I did sprints and other stuff. Then I did leg, arm, and ab workouts with the boyfriend and his friend. It felt really good. :]

Thanks to all... the boyfriend, the friend on the track, and also to you Ronnie.


Sunday, September 27, 2009

TOBI did WHAT?!??!

Hear ye! Hear ye! A few weeks ago TOBI did something new that caught my attention quicker than words can describe! Read my story!

It was a quiet day in the apartment. My roommate was gone and I was enjoying some down-time at the computer while doing treatment, a common sight. I was talking online to my not-actually-related sister when something surprising happened: the fire alarm for my apartment complex started going off. I calmly told my "sister" I would be right back, grabbed my keys, put on some shoes, turned off my machine, and walked outside. To my surprise, no one else was exiting their apartments. Nor could I hear any other fire alarms. Only mine. I go back inside and the fire alarm ceased within seconds. I then understand: TOBI set off the fire alarm in my apartment. It was the only explanation. I told my "sister" and of course she was amused. Then a second thought hit me: that means police and the fire department are on their way. I walked out of my apartment on the street side and a cop was leaning over the railing with 2 cop cars behind him. "Did your fire alarm go off?" "Yes sir..." "Well? What's the problem?" "Umm.. let me see if I can explain this. [fidgets] I have to do this medicine... it makes a thick mist and it somehow set it off..." [in his radio] "False alarm. Medicine"

Thinking back later, I'm surprised he didn't call a drug raid. "Medicine" that makes a "mist." Riiiiiight. It was code for "weed" obviously... haha. I asked the cop what I was supposed to do because I couldn't NOT do TOBI! He gave me the phone number and told me to call if it ever happened again so they wouldn't come out.

I called my parents after that. My mom laughed REALLY loudly when I told her the story. My nurse practitioner was amused too. As was a few of my CF friends. *sigh* Glad my little college-life story could amuse everyone!

To solve the problem where I could do TOBI without turning the air on really low so it would run for 30ish minutes, my smoke alarm went from this

to this

at least for now. When I finish TOBI I'll take it down... we have 3 other smoke alarms in this tiny apartment so I'm not really too worried.

So watch out TOBI users!! Smoke alarms and TOBI do not mix!


Sunday, September 13, 2009

Sunday morning....afternoon doc visit

My pediatrician's clinic actually sees patients on Sunday from 10-11. With my cough not getting any better, my mom wanted me to go see whatever pediatrician was on staff that day. We got to the clinic right at 10... and had to hunt for a parking spot. That's a really really bad sign. We signed in and found two seats that we became very well acquainted with. Roughly two hours later, we were called back. First thing they do is get my weight. "112lbs".... GRRRRR. The nurse gets my symptoms and tells me the doctor will be right in. A few minutes later, a pediatrician walks in. I've never seen this doctor before, but he's looked over my chart. Just in case, my mom reminds him I have CF and then we go over my symptoms again. No fever, no aches, no vomiting... I don't have the flu, man. He does a CBC and a chest x-ray just to better understand what's going on. So, after blood is squeezed from my poor finger, and my chest had been x-rayed, I also get a flu test. That was kinda uncomfortable for those who haven't had one. CBC comes back with slightly elevated levels but nothing to be alarmed with. Chest x-ray comes back clear, as usual. Flu test comes back negative, big surprise. My mom and I continue to wait.

The doc decides I have walking pneumonia and wants to put me in Zithromax. For those who read my drug list, you'll see I'm already on it. So we told the guy this and he stopped in his tracks, poor man. He was stumped. After lots of thought and brainstorming, he decides to put me on an antibiotic of medium strength to prevent a secondary infection. So I'm back on cipro. And then I got my flu shot. Yay! I've never been so excited in my LIFE to get a flu shot. I'm here at college *freaking out* because people are sick all over the place. As soon as the H1N1 shots come out, I'm getting them. I just can't get the flu of any kind!!!

So that was my 4 hour Sunday trip to the doctor.


Friday, September 11, 2009

Daily Life and Background

Daily life for me is in the middle of readjusting to living in a new city for college, but that doesn't change my CF routine. And why doesn't it change my CF routine? Because that routine is such a small part of my life that it takes a lot to be affected.

Whatever time my alarm goes off (or whenever I wake up), the first thing I do it get my morning treatment ready. I'm on auto-pilot during these times, especially those mornings I get up in the 5 am time frame. I do TOBI on the 28 days on/28 days off regimen so when I'm on TOBI it's Albuterol and TOBI, otherwise it's just Albuterol. After I'm ready for school/church/the day, it's breakfast time!! With breakfast I take those morning meds: 5 Pancrease MT20 Enzymes, Oscal Ultra with 600mg of Calcium (and no Iron), Align probiotic, Vitamin E, Vitamin K (every other day), Mucinex, Milk of Magnesia, Zyrtec, and Zitromax (MWF). Come lunch time, I pop 5 more of those Enzymes. If I'm kinda sick or just feeling in need of some better breathing, I do an extra Albuterol treatment whenever I can fit it in in the afternoon. "After school" hours means another meal! And 5 more Enzymes! Dinner brings more of the same and a few more pills: Oscal Utlra again, Prilosec OTC, Milk of Magnesia, and another Mucinex. Sometime before I go to sleep, I do my evening treatment: Albuterol, Pulmozyme, (TOBI when I'm on it), and ~13 minutes of my Vest on pressure 6 and frequency of 11.

To assist with the weight gain, I also drink ScandiShakes (chocolate!). They are fantastic.

I don't have the specifics on my FEV1 but it's usually in the high 60s low 70s with the %. Next appointment, which is late October, I'll try to remember to write it down. I'm 5'4" and ~119lbs.

Hospitalizations: I stayed in the hospital from the time I was born (Oct. 29) until Dec. 10. During that time, I was diagnosed with CF, treated, and had meconium ileus. Because of that, I had surgery to fix it (and they removed my appendix). Sometime when I was 3, I went back due to obstruction and they reopened the same scar from surgery #1 and fixed it. So now I have a sweet 6-inch scar across my stomach just above my belly button. Swimsuit season used to be a curse for me, but now I wear my scar proudly. 7th grade, I went in for my first IV antibiotics because I was so sick. 4 days in the hospital and 2 weeks total on IVs. This was before PICC lines. So I had a needle in my arm. Fun.... not. I've been back in the hospital 3 more times for antibiotics (with PICC lines): once during the end of 11th grade, during Thanksgiving of senior year, and during March of senior year. The March of senior year was for a short course to prepare me for sinus surgery, my first ever. Post-surgery, the day after I was sent home, I fell ill to pneumonia. So back to the hospital I go for more antibiotics and more Vest usages. Of the combined surgery and pneumonia stays, I was there 12 days. That was too long for me.

Genes: I have the DeltaF508 and some rare one that I can't remember the name of it. They just figured out what it was a few years ago. Last I hear, they considered it a "null gene."

Diet: Anything goes. High calorie, high protein, high sodium, high fat, high carb....

Oh, the reason for the milk of magnesia in my diet is because in 5th grade, I had been waking up every morning with severe pain in my abdomen but no doctor ever found anything wrong. Finally, after drinking barium and having a barium anema done, they learned I have a stricture in my colon (narrowing of the colon) and need M.O.M. to help my digestive process.

Family: I have 2 older brothers. Neither have CF. One has been tested so far and he is not a carrier. My other brother will get checked soon. I'm the only known person in my family to have/have had CF.

Not sure what else to tell you! Any questions? My email is at the top of this blog at all times.


Tuesday, September 8, 2009

"Thank you..."

Yesterday I did something I had never, ever, ever done before and never, ever, EVER dreamed I would ever even do. (It's not a juicy story, so don't get all worked up, haha)

I'm ill. With what, I couldn't tell you. I had mentioned in my last post that it wasn't the flu, and I still think it's just a cold. Either way, I'm coughing so much that for the second day in a row, I still don't have a voice. It's BAD. I'm convinced I cough all night while I'm asleep and wake up even more hoarse, not letting my voice heal over-night. Most of my coughing has been dry coughing (not producing any of the mucus I need to be coughing up from my lungs) and that doesn't do me any good. So last night I sat down to do my Vest and about 6 minutes in, I have this wonderful productive cough that makes me feel so much better. I turn to my Vest... "Thank you...". People, I hate that thing. I cannot stand my Vest. I do it like I'm supposed to, but I don't like it. When I'm sick to my stomach, it makes me feel worse, and it's just annoying in general. I know it has health benefits which is why I do it even if I don't want to. So it was quite a unique moment when I turned to my Vest and thanked it for helping me, for doing its job.

So while I may hate it, I do appreciate its help. So here's to you Vest. And the fridge you sit on.


Monday, September 7, 2009

WOO College life!

Ok, so that post about my history/lifestyle will indeed have to wait.

I have comfortably moved into my apartment, been through Rush, helped my roommate move in (well, sorta haha!), and joined a sorority! SIGMA KAPPA! I'm pretty excited about the whole thing, really. I think I caught a cold/sinus infection/not the flu during Rush, so I've been coughing WAAAY more than usual. And during Rush there is a lot of talking to people and last night was a lot of yelling for your sorority. Naturally, my voice is shot. I'm doing TOBI right now, and I didn't realize my voice had died until I read something on facebook and made a comment outloud. Boy was that a shock when I couldn't keep a level tone and some words didn't come out at all!! My voice *usually* heals over night, like the rest of my body except my back, but if I'm still coughing like this then it won't. And meeting all of my new sorority sisters without a voice is going to be difficult! But since when I have I backed down to a challenge?? lol

Oh, and today, is a pool party and karaoke. Yep, they are probably going to make me sing with a voice like this because I told my heart sister Emily last night that I could sing. Whoops!

Oooh... I'm hungry. It must be time for breakfast. Yummm