24 days and a funny video!

24 days until my next doctor's appointment?! I feel like I just went! That's kinda how these things work I guess.

My weight is down a little bit, according to the gym scale, due to some stress, but I'm eating lots again and I expect it to jump right back up!

Next week... study study study. 2 tests, 2 quizzes, and a paper due. Oh hi college. I forgot you were there...

Last night my cousin Louis was born!! Another baby in the family, oh boy!! I can't wait to meet him this Easter!

So last week was Greek Week and part of the points your sorority/fraternity gets is from giving blood. On Thursday I went with 4 of my sorority sisters to give blood. I was moral support. I got asked about 10 times by friends who "know" if I was able to give blood. To be honest, I'm not sure. I take an antibiotic MWF for inflammation, but otherwise I don't see why not. This time, I couldn't have given because of my recent tattoo, but other times I've never had a sure answer. When I had asked my mom in the past, we had decided that I shouldn't because 1)some of the meds I'm on, 2)I "donate" plenty to my doctor every year, 3)I have had terrible needle experiences in the past, 4)I just now hit the weight requirement. I've heard some CF patients who give and others who have been turned down, so I haven't tried. The only reason I would is because I'm O+, the universal donor. You can never have enough of my blood! I don't think I'll ever give, but everyone else should! And I'll gladly be there to hold your hand! :]

Time to study. A quick video to make you smile/laugh until you cry (like I did!)
http://comedy.video.yahoo.com/?l=3774740&v=8745428
(Dad, and you thought MY dog has problems!!)
-Annie

Body talk

So as of late I've become more aware of my body shape/size compared to my peers. It helps that other people like to comment on it too. Don't take me as vain, I'm not, but it's nice knowing that my good and bad genes are working together to create something that isn't half bad!

I'm the friend my friends like to dress up. Seriously. I'm the Barbie of some of my friends. It's actually really fun though. I'm the size of most mannequins, seeing as I like to take the clothes off of the mannequins and buy them! I'm thin, not too thin, and actually have some shape and character to my body. I'm not a twig (anymore). Finally, FINALLY, I like my body.

The only thing I don't like is my lack of muscle tone, but guess who just started doing circuit training again!! Oh yeah, I'm getting those legs back. Can't wait.

However recently I had a bump in the road. I went to a store, that shall remain publicly nameless, to find a dress for meetings. I found a really cute one, grabbed the small, and went to try it on. It was way too small for me. It also came with a belt that wrapped around the smallest part of the waist: I couldn't clasp it.

Hear me out: I'm a size 3 and couldn't fit into a SMALL at a normal store that I have bought clothes from before. I was livid and gave the store a piece of my mind. I didn't fuss at the employees, it's not their fault, but I stood outside of the store and fussed to the general store opening. Pathetic, maybe, but think about it for a second: if I was a "normal" 20 year old girl, I might have serious body image issues and might feel I'm too fat, since I can't fit into a small, despite the fact that I'm a size 3. It's moments like those that feed the body image problems of anorexic girls. Touchy subject, but it is a REAL subject and a REAL problem. And putting me, and girls my size, into a medium dress may not sound like a big deal, but even I was embarrassed for myself. It took me a minute to come back to reality (that maybe the dress was shaped different that I am, that maybe it was labelled wrong, that maybe it was just that style of dress, etc.) but that minute was long enough to hurt my feelings! And I'm TRYING to get fat!! Just think, for just a moment, how if that scenario can mess with MY head, how much damage it can do to a young lady's mind who already has body issues. Yeah, now we're on the same page.

Enough body talk for now.

Have a great day. :]
It's FRIDAY!
-Andrea

Doctor's Appointment recap!

PFTs: same as my appointment last month

Weight: same as my appointment last month

Amount of blood I'm coughing up each time it happens: less than the time before

My doctor did not see that any action needed to be taken! That whatever the problem was, it was being fixed already. I will stay on the upped dose of Vit. K until the end of the year.

This is fantastic news!!!! Everybody was very confident in me (including myself) that I would get a great report and ta-da! I did!

Thank you for your concerns/prayers/thoughts everyone. I needed to go in to see my doctor and I'm glad I did.

:]

-Andrea

Doctor's Appointment recap

First, I would like to say that I waste a lot of time worrying! And while it is a good thing to listen to your body and see what's wrong with it, sometimes our bodies aren't saying what we think they're saying. That being said...

I had a pretty good report! I gained weight, PFTs were stable, and my freaky lung pain is gone. We guessed that the lung pain was from my very sudden shift from a sedentary lifestyle to a very active one. My throat is hurting because I have a cold. That's all. A simple cold. No need for antibiotics, just to wait it out. AND, I was so worried about clinic taking the usual several hours and me missing my 1pm lab back at college, when this clinic visit only took and hour and a half! Shortest clinic ever! So not only did I make it back in time for my lab, I had time to eat lunch with the boyfriend too. Awesome!

So, here are the numbers:

Weight: 116lbs (up from 115)

FEV1: stable around 68%

I worry too much. lol

Starting Cayston today again.

Alright, time to carry on with my life. :]

-Annie

Post-Doct. Appointment

DONE. Yes! It is always looming, it seems, but one more check-up has come and gone! Report:

Weight: 115 (down)

FEV1: 70% (stable)

Small airways: down just a tad

Today was not a good day health-wise because I hadn't eaten since lunch yesterday because I felt full/sick, another reason my weight was a little down. On the plus side, my daily number of pills was dropped!! I no longer need to take a daily D vitamin (switching to a once-weekly), my E and K vitamins are dropped, I'm down to one mucinex, and not more Zyrtec unless I have symptoms. YAY!!!!!!

I'm trying out some new shakes, even though I love my old ones. These cost less. If I love them too, I'm switching. If not, I'm sticking with the ones I love!

Now that that's over, on to the rest of my life. :]

-Annie

OH! I wore my mask today at clinic!!! Everyone loved it.

"..I'm addicted, it's a crisis"

So I do have a new addiction. But it's not a crisis. I am so totally sold out on the Wii Fit. See, I got really tired of running outdoors (hot, gross, bleh) but I didn't want to stop working out. So I switched to running with the Wii Fit (along with other workouts). The runs do make me cough, so I figure they're doing their job. I also regularly do yoga, strength training stuff (ab work, leg work, etc.) play games that make my calf muscles hurt the next morning (ow!!) and play some Wii tennis/boxing to beef up those arms. I love it. I really do. As soon as I finish this post, I'm going to do another hour on it. I do about an hour each day. It burns, I really do get a workout from it. And it keeps track of my weight and BMI. It SAYS I gained 5 lbs yesterday, but knowing me, it probably has something to do with when I ate. But the Wii Fit was pretty excited!

Another reason I love doing with Wii Fit is that I know I'm working on getting the body back I used to have. I used to be so strong and so toned, but then I got fat, old, and lazy (haha) and lost most of it. I want to be back in shape, and not just being able to run a mile without too much strain but have my awesome leg strength back, my amazing abs once again, and maybe actually build up some arm strength. My right arm is already stronger from all that Wii tennis I do, but my poor left arm is getting left out. I'll balance it out though.

Ok, seriously, I really want to go play so I'm gone.

Beach in 4 days.

Chris comes home in 3 days.

4 days left to organize the boxes brought home from college.

*sigh*

-Annie

"We don't feel pain"

Finally! A good day in college town! I had had a pretty great 7 day break (snow, family, home cooked food, etc.) but yesterday and today were back to the grind, and they turned out pretty great! One day during break, I did a little retail therapy to help lift my spirits. I spent most of it on make-up and other g.irly items (weird, for me) but I'm so glad I did. I will actually put forth the effort in the mornings to make myself look decent! That helps motivate me to get up out of bed after doing TOBI. That, and my new hair dryer. I'm in love. Just look at it! I pretty much leave the little attachment thing on because the stylists use it on my when I get my hair cut and I love it. The shower-head looking thing makes me a little nervous! I'm off-topic now. Yesterday, both of my morning classes let out early. While I normally groan when my 8am gets out early because I just sit in the same building until 10am, I have found that I really enjoy chatting with some of the people who are also in both of my morning classes. They can be pretty entertaining! After my second class let out, I did some homework and waited for the boyfriend to make the drive from home to college. We made a trip to SuperOne (much needed!) and I baked a cake (yummm). While it was cooling, we went to the gym. YES you read right. I finally made it back to the good ol' gym. The boyfriend is helping me with arm muscle building machines so I can gain my arm strength back, and I always work on my legs. However, while I was doing one machine, my knee popped funny. It doesn't hurt unless I put a lot of strain on it, but I was nervous about running. So I ellipticaled (lol) a mile instead of running. I was proud of myself, but disappointed with the time and respiratory results. So...

Today I made it back to the gym! Yayyyy!! 2 days strong and I'm proud of myself. Today I did the treadmill instead of the elliptical machine and I could feel a difference. The pounding of power-walking (I dislike running on a treadmill) definitely loosened some junk up and I was coughing away (much to the worry of nearby joggers). I had a lot of good, productive coughing for the next 20 minutes after that too. Oh, and before the treadmill, I did all of the arm/leg machines again. Got to put weight on me somehow! And I miss my strength from being an athlete.

I was encouraged by Lauren's post (Read here), but I haven't yet had the time in my day to add in extra miles. With adding all of the weight work too, and working with a partner, it takes up a lot of time. That's not a complaint, but when I have the time, I'll definitely up the distance. It may be some serious power-walking, but it helped! Baby steps....

So the boyfriend has put himself on a diet. Using my amazing new Kines knowledge, we have worked out a calorie amount for him to lose weight to, along with working out. So less about the "weight" and more about the "fat", if that makes sense. Anyway, because of our VERY different needs in calorie intake, we've come across some problems that will only get worse with time: how do I feed both of us together?? I need excess calories/sodium/fat and he needs just the opposite! We're trying portion differences if we share something cooked (I eat 2/3; he gets 1/3). He's cutting out most snacking (unless it's healthy/low calorie; and then it's limited) while I eat constantly. Me eating makes him want to eat too. Poor guy... I really do feel badly about it, but there's nothing either of us can do right now. I need to gain weight and he's trying to shave it off. I'm the one who is really pushing the gym right now, and I know he'll always go if I go. So go we shall!!

Oh, and the gym. So two days now, and there's only one part of my body that hurts: my hands. I'm building my calluses back and they HURT!!! Working out was so painful today, but mostly in my hands! Oh well. Another day at the gym with the phrases "We don't feel pain" and "I ha.te you Chase Wooten" running through my head.

Time to explain. Chase Wooten was one of my keeper trainers/off-campus soccer coach/soccer camp keeper coach over the last 8+ years of my life. He was the only trainer I've ever had who I actually wanted to keep pushing myself for. He was a great motivator and a hilarious guy. (Oh! I'm saying "was" because I'm "retired" and he moved away.) If the training started to hurt, "Nope, we don't feel pain. Let's go." I don't think I've ever pushed myself harder than when working for Chase. He made training so much fun with his dry sarcasm and comments that made me laugh and want to do better. So, I personally adopted the phrase "We don't feel pain" as my workout slogan for when I don't think I can lift another weight or take another step. And I don't actually ha.te Chase, not at all, but that's another thing I would say to him as I worked because it hurt and he was the one pushing me. Just another joke to get through the pain.

So, if I was a great author like Betsy, CG, Ronnie/Mandi, or Lauren, I would end this post in a cute way, tying in "we don't feel pain" to some metaphor of life. But I'm not, so I'm just going to end it with this: tomorrow morning, I dye my hair. Goodbye brown. Hello red.

-Andrea

What a week!

This really has been one of the worst/longest weeks of this quarter. And I'm so glad it's over.

Monday- A day off and I spent it doing homework.

Tuesday- I did my presentation and took my test. I did fairly well on both of them. I went to my lab, but due to a mix-up, came in late and got yelled at and kicked out. I cried because those lame miscommunications, when concerning school, don't happen to me! Luckily, I contacted my TA and got it all worked out. That night I played some soccer and came out with a bunch of bruises and a limp.

Wednesday- Didn't make it to my 8am (so tired...) but drove in for my doctor's appt. (summary after this). I went by Casey's house to visit her new puppy, which made me really happy! Drove back and went to a self-defense class that night. After that, I studied with a friend for a few hours until around 10pm. I was so tired.

Thursday- Went to my two morning classes and went to the lab right after that (on time!). Right after that, I had a soccer game and then studied until 11pm for a test the next morning.

Friday-8am bio test. Then I went and napped until noon. At 1:30, I did yard/house work to prepare for Sigma Kappa Parents Weekend, until 5pm. I ate dinner at my Big Sis's house and we watched a movie until 9:30. Then I cleaned my apartment until a friend called me to talk faith. We talked for an hour or so and I realized it was 1130 when I got off the phone. I still had to finish cleaning the apartment since the rents were coming at 10am.

Saturday- 10am: Desserts with Mom. 12-3: Bowling with Dad. Then we drove out to my local church so they could meet some of my friends. Then we went by my great-aunt's house here because we haven't seen her in a while. Banquet then from 6-8. I then spent from 9-12am comforting a friend through a hard time. Then Casey spent the night with me.

Sunday- I got up for church at 9. Cooked lunch and went to choir at 3:45-4:45. Meeting at 6. And now, I'm watching the Saints game.

*deep breath*

I'm still really tired.

I'm supposed to go play soccer tonight at 9:30, but I think I'm gonna pass this week. It's been too much and I need some sleep. Some serious sleep.

Ok. Doctor's appointment. I lost 3lbs (grrr) but my PFTs were up! My FEV1 was 71% (Up from 64%) and another thing... (the FFV? Or something?) was 94% (up from 70%). The peak flow results are up from always around ~510 to 540 EU. It's always good when, as the CF Dr. looks over my results, she smiles. They are letting the slight drop in weight slide this time, but they just don't want to see it continue. She is so proud of me because of the life-choices I'm making and the good head I have sitting on my shoulders. She gave my mother and me high-fives and asked if she could clone me and have a whole clinic of me because "it's refreshing to see CF patients getting out from Mama's wing and still taking care of themselves because THEY want to and they know they NEED to."

So last week was rough, but this week will be better. And thank goodness. I need it.

-Annie

Dr.'s Appt

Not in much of a talking/typing/blogging mood, but I said I would post after my next doctor's appointment with updates:

FEV1 is a little low, but nothing to be alarmed with yet. ~64% of predicted.
The peak flow meter was high though! 505
And my weight was up ~4 1/2 pounds. Almost a third of the way to gaining the freshman 15.

They didn't talk about my PFT results too much because they were excited about the weight and my lower scores aren't yet a red flag. My reasons for the lower FEV1 are: less exercise and exposed to more smoke on a weekly basis.

I've had a really really long day, so hitting the sack pretty soon here.

Night !

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.

-Andrea

Real Stuff updates

Exactly 1 month from today, I will be living in my college town for the first day of Rush. I'm pretty excited. Sometimes I get this wave of nervousness (or dream anxious dreams...) but then the excitement comes back. I think it's pretty cool that the same kid who wasn't really supposed to make it out of the hospital at birth, or live past 3, is going off to college. It's been a really cool road to get here too. Despite having CF, most of my life hasn't been medical. Most of it has been spent playing soccer, going to school, and being with friends doing what "normal" kids do. What a crazy life God has given me. I mean, He gave me life and then threw in this curveball to deal with everyday and yet, He gave me a pretty normal life.

I listened to a sermon on Sunday of a guy in College Station, TX, and he said at one point about his herniated disk problems, "No, I know this isn't a cure, but it will help. And I plan on doing the best I can to be ready for when God does bring that healing for me." Those words really hit me hard. This really applies to any medical problem, but to do everything possible to get better so when God decides to heal you, you've literally done everything possible to get to that point. Wow. That's not me. I get so lazy and tired of doing what I'm supposed to do sometimes that I just do something half-way or not at all. Yes, I know it's destructive. Yes, I know it's hurting others besides me. Yes, I know it's selfish but you try dealing with this everyday for 18+ years, no breaks, no mulligans, no getting actually better. Just keep doing it. (And for those who are in the same position as I am, have you ever skipped stuff? Most likely, yes.) However, with this new freedom of college, I'm going to have to step it up because sometimes it's going to be even harder to stay on top of everything I have to do since I'm managing literally ALL of it now. So this attitude of "do everything I can so I'll be ready" is what I'm trying to grab and hold on to. I know there will be times when I'm shot down completely because I can do everything right and I still get sick or don't feel well. That's like a kick in the stomach for me. I hate that more than anything. But oh well.

Other things.. umm... my high school friends start back 2 weeks from today. Poor kids. I'll be there that day to pick up my yearbook, but not going to class there anymore. :]

Oh! I gained weight. :]]]]]]] I gained the weight I lost after my sinus surgery in March/April. That means I had a very happy doctor's visit recently.

You know what I love? I love seeing my doctors outside of clinic. I went to a movie in the park and saw my nurse practitioner. At work (well this one makes more sense) I see my pulmonologist, my dietitian, my nurse, and once my main CF doctor. It makes my day. I always run up and hug them.

Alright. Time to get moving with my day.

-Andrea

Where has the time gone?

Between trips, orientation for college, and having a broken laptop, TIME HAS FLOWN! But Lappy is mostly repaired and I'm back. The only thing that's really current is that shopping for college is more fun than pretty much most anything else. I am *giddy* at times. Part of me is eager to move into my apartment and part of me is content here at home for the summer. Either way, I get to enjoy the summer until I get to move into my apartment so I guess I win both ways?

Nothing else to really update on. Oh, except I had a Dr. appt yesterday and I had gained 5 lbs since my appointment in April. For those who don't know, that's a big deal and a VERY good thing. So yay!!

-Andrea

PICC free!

This is probably the best feeling in the world. I love being PICC free! My skin is ra.w and tired, but I don't care!! And I have a gaping hole in my arm from the line itself... it's pretty gross too. I'm really proud of it though! Battle scars from my fight with CF!

I'm back playing soccer and feeling pretty good. They told me at clinic today that these antibiotics are sometimes appetite suppressants. So I lost a few pounds. In 2 weeks, I lost almost 2 pounds. I think there are a million people on this planet who wish they could, but I don't want to! As easily as people gain weight, I lose it. But in reverse, as hard as it is for people to lose weight, that's how hard it is for me to gain weight! So it goes.

That's my update! PICC free and lovin' it.

LEAH- you're next. :]

-Andrea