Some topics I cover
Monday, December 28, 2009
Saturday, December 26, 2009
Thursday, December 24, 2009
Sunday, December 20, 2009
Saturday, December 19, 2009
Friday, December 18, 2009
Speaking of, I need to pack!! I haven't even started packing up the apartment, and the boyfriend will be here soon to load up Dora (my car) for me! I haven't started yet because I'm waiting for a friend, a marine, to call me back on if he can help me (or get someone else) move our Sigma Kappa letters inside over break. They are WAY too heavy for me to move.
Oh, and my biology test today? Piece of cake.
Thursday, December 17, 2009
Wednesday, December 16, 2009
Tuesday, December 15, 2009
Friday, December 11, 2009
Monday, December 7, 2009
Tuesday, December 1, 2009
Today has not been a good day overall. It started when I woke up late and has kinda gone downhill. That's probably part of the reason I'm tired. I'm just drained from all the negativity of my day. Tomorrow can only be better!
I'm going to miss being tackled by my puppy early in the morning tomorrow. Even though she always woke me up earlier than I wanted, I loved every time she did it. And especially when I fell back asleep and woke up with her curled where my knees bend, fast asleep with me. That's something to wake up to. :]
Thursday, November 26, 2009
Saturday, November 21, 2009
Tuesday, November 17, 2009
Carter Elijah Ray
8lbs 2 oz.
20.5 in long
a head full of black hair
born Nov. 16, 2009 at 10:36pm.
He was a "chore" to birth seeing as my sis-in-law was in labour for 16 hours.....
I drove in from college for a day-trip to see him. He's beautiful, yall. He's beautiful. I held him for hours....
Now back to studying. 2 finals tomorrow. ugh.
Saturday, November 14, 2009
On more excited news, Monday is when my nephew is supposed to be born!!!
That's all for now. Just felt like I should post something. Nothing blog-worthy has happened lately.
Saturday, November 7, 2009
Today was a *fantastic* day. Let me tell you what happened:
I was up at 6 (this was not the good part) and leaving town by 6:30 to drive 35 miles to another city to do a Memory Walk to support Alzheimer's research. The walk didn't start until 9, but I went early to help set up. I went with my sorority because Alzheimer's research is one of our major philanthropies. After we left and made it back to college-town, I chilled in the apartment for about 45 minutes (roommate hadn't woken up until after I got back). Then I left to go to my friend Stephanie's apartment. From there, we drove to the lower fields and supported the seniors in our sorority in the Flag Football Tournament, hosted by another sorority on campus. We were out there for several hours, but THEY WON!! 1st place!
From there, Stephanie and I decided to just drive. Didn't matter where. It was such a pretty day and we didn't want to be cooped up inside. So we got gas and took off, singing songs and chatting it up. We ended up going to a nearby lake. It was so beautiful and calm.
We stayed there.... really not sure. We lost track of time skipping rocks and talking. We went back home and she cooked dinner (chicken, rice, and broccoli) with some other friends. It was so much fun.
What a life!!
(p.s.- if you're not feeling well, don't do the serious breathing thing with the Vest. I just discovered it makes you feel 10000x worse.)
Thursday, November 5, 2009
Where have the days gone?! I went home this past weekend to be with my family to celebrate my birthday (which was fun!) and then they left me to go watch a football game 4 hours away. Oh well. I enjoyed time to myself, with my puppy!, relaxed a bit, and worked on a research paper a bit. Saturday was Halloween, but since I was home alone I didn't want to answer the door often on an evening known for being creepy. So I literally took the doorbell off of the front of my house and put up a sign saying I had no candy. I wasn't disturbed. Well, not until some chick in a red dress knocks on the side door....
While that may sound creepy, it's not. She's usually harmless. :] I called my little "sister" to come spend the night with me because I was tired of being alone on Halloween. It was starting to get to me. So she came from her junior homecoming to stay with me (and return my dress!). We had a fun little gi.rls night in.
Then it was back to the grind with school. Two nights this week, I have been up until 3am working on the same research paper. I turned it in today, actually quite satisfied with it. We'll see how I do.
Other than that, I feel like I haven't really gotten anything done, but I have. Little things, that will all add up one day.
The quarter is coming to a close!!! Yay! I have almost finished my first quarter in college. How crazy is that? Oh, and have I mentioned that I *love* college? Because I do.
That's all for now!
Thursday, October 29, 2009
Sunday, October 25, 2009
They are kil.ling me right now! Today was initiation and I had a headache the whole time. :[ It was still wonderful though.
Oh, and last night... ooooh last night. 3 or 4 times between 2-4am, I got up and ran to the bathroom because I thought I was going to throw up. Every time I prayed to God to not let me throw up because I h.ate it and I couldn't be sick for initiation. I had to be there. Eventually I drifted back to sleep until I few minutes before my alarm went off so I got up anyway.
My mom brought albuterol!!! About to do a treatment now. I don't feel like I need it (not coughing a bunch, not short of breath) but I know I need it for the long-term affects.
One of Sigma Kappa's newest Actives. :]
Saturday, October 24, 2009
It's not a really bad sick, but it came at the wrong time. I woke up the morning with a raw throat and a stopped up nose. I've been coughing like crazy for the past few days but blamed it not on being sick but on my 60% lung functions. Unfortunately, it came right as I ran out of albuterol. Yep. I'm out. Isn't that great?? Thursday night I realized I only had 3 vials left. I used one for that night, Friday morning, and then Saturday morning, trying to stretch it out. My mom is coming to town on Sunday and I've requested multiple times for her to bring me some, so I'm pretty sure she will. If we have some at home.
Also, I have initiation into my sorority tomorrow (the reason my mom, my aunt, and my grandmother are driving in) which is a whole day event and I *cannot* be sick. Grrr!!!!!!
Friday, October 23, 2009
Today I slammed my left middle finger in a very heavy door. It really hurts, even 5 hours later.
Today was Sigma Kappa new member retreat. All us new gir.ls hung out together with all the actives. It was a TON of fun. I love them so much.
No more Oct. 23, 2009 posts.
The boyfriend woke up this morning and called me. We had been trying to make plans to hang out after my 11am test. He called and said, "I'm not going to be able to see you. I'm really sick."
Symptoms listed online for swine flu:"If you or a member of your family has a fever or high temperature (over 38°C/100.4°F) and two or more of the following symptoms, you may have swine flu:
- unusual tiredness,
- runny nose,
- sore throat,
- shortness of breath or cough,
- loss of appetite,
- aching muscles,
- diarrhoea or vomiting."
Boyfriend symptoms: cough, chest pain, chills, fever, achy body, feels like he's going to throw up.
I'm thinking he's right in his guess of the swine flu. He's not one to admit that he's sick even when he is, so the fact that he called me to tell me he was sick and is going straight home and to the doctor is HUGE. "This one has knocked me to my knees" he said.
BLESSING: we were both super busy yesterday and therefore didn't get to see each other at all. I'm not super worried I have it too.
The part that bothers me the most is when he's sick, my natural "motherly" instinct kicks in and all I want to do is help him get better. I want to bring him soup, change the temperature when he needs it, etc. Nurse him back to health, but I can't. I have to stay away from him when he needs help the most.
I feel kinda selfish staying away. I UNDERSTAND it's for my health and that he doesn't find it selfish because he wants me to be well, blah blah blah. Doesn't change the fact that he's sick and I can do anything about it.
There is no confirmed diagnosis yet, but he's sick with SOMETHING bad and it sounds like the swine flu. Awesome. Poor boyfriend. :[
Tuesday, October 20, 2009
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.
Thursday, October 15, 2009
"this is MR. GREEN GENES.....lsuhsc-new orleans scientists cloned the green fluorescent protein i use for my cells into the genes of the cat!!!! this type of knockout gene therapy is being used to help discover treatments for cystic fibrosis and diabetes!!"
Reassurance that people are working to help us. And are making progress.
Wednesday, October 14, 2009
I was supposed to have an Intramurals soccer game today, but our competition didn't show. That frustrated me because I was really pumped to play soccer. I've missed it so much! So, already dressed for physical activity, I decided to go to the gym. *huge sigh*
Needless to say, I still don't like running. Sorry, but I don't. But I still went to the gym. On my way to the track, I glance into our blue gym and see some guy in the very back kicking a soccer ball against the wall. I shuffled through 2 different basketball games to get to this guy. I called him over. "Hey, do you want someone to just kick the ball around with?" "No." Wow. Shot down. "No, I mean, my game was canceled and I just really want to play." He half-smiled and nodded and gave me the ball. "Your game cancel?" That's when I understood he was a foreign exchange student and didn't quite understand me, not a really rude kid. He looked like he was from the India area, but it was hard to tell. We spoke very little, but ran drills (ugh) that involved long sprints (UGH!!). After a few minutes of that, I was tired so I sat and stretched (that's what all the good soccer players do when they don't want to admit they're tired. "I just need to stretch, hold on.") After that, we just repeatedly kicked the ball at the gym back wall for about 10 minutes. He finally said "I think I'm done." I shook his hand, said it was nice to meet him, and watched him walk out.
I have no idea what is name was or where we was from. We spoke very little, but communicated very well. It's crazy how sports can connect people from across the globe together. After that, I called the boyfriend to see if he wanted to work out, but he was going later with a friend. So it was just me... and the track. *siiiiiiiiiiiiiiiigh*
I was already a little tired from playing soccer, but I ran. I am not sure how many laps around this track is a mile (I've heard 10, I've heard 16) but I ran 12 in 7 minutes (which makes me think it's 16...). I sat on the track afterwards and coughed so much and so loud, I had the rest of the gym staring at me (it's a raised track above the part of the gym with all the weights and machines). I'm pretty sure everyone thought I was about to keel over.
I can't run very far yet, but I'm trying. I am. I pushed myself today, and that makes me angry that I can only run that far. I'll keep running...
Oh, and just as a side note, I was so zoned out from running and walking back to my apartment that I tried to open my apartment door by using the clicker that unlocks my car. *sigh*
Tuesday, October 13, 2009
So today, I donated 10 inches of my long, brown hair so some child will have a wig. The nice lady evened out what was left of my hair after exclaiming "Wow! You still have a lot of hair left!" *HUGE sigh of relief*
I'll be honest, that moment when she was adjusting the ponytail to the right length, right before she cut it, I got nervous. "What am I going to look like?" "This is totally outside of my comfort zone!" "What if I look funny?!" Then, once she started cutting it and it was a no-going-back situation, my thoughts cleared and I realized that the kids who are getting my hair, the kids who go through Chemo, are asking the same questions and saying the same things. "What am I going to look like? "This is totally outside of my comfort zone!" "What if I look funny?!" Then I knew I had done the right thing, and whether I loved my hair or hat.ed it with a passion, I helped someone else.
Turns out I *LOVE* my hair. So we both win. :]
From a few inches longer than this....
......to this!! 11+ inches cut off!
Monday, October 12, 2009
5 Reasons Why It's a Good Idea to Call in Sick
Do you dread calling in sick? Whether it's the fear of a judgmental boss or just concerns about missing out on important happenings, health experts want to put you at ease. There are times when making the call is a must. Confused about whether staying home is a good idea? Here are five signs that a sick day is in order...
According to a recent Glamour.com poll, only 21 percent of readers say they make a point to stay home when they're sick. The rest of you do sometimes or not at all.
Guys! The world will not end if you stay home and a.) rest and recover so you can get well again, and b.) prevent the spread of your germs to others.
But, I know it can be confusing about whether a sick day is in order--especially at 6 a.m. Here are five signs, from the experts at WebMD, that you need to make the call to your boss and head back to bed:
1. If you wake up feel pretty icky with a sore throat and the sniffles (which weren't there yesterday). Health experts say that the first few hours/days of a virus tend to be the most contagious, so spare your co-workers your germs and keep your sneezy self at home until the following day.
2. If you're taking medications that may (even slightly) impair your ability to do a good job. Whether it's a prescription medication or just over-the-counter cold meds that makes you feel like a space cadet, if the medicine you're taking is impairing you in any way, it's best to stay home.
3. If you have a bad sinus infection. Experts say that sinus infections can cause yellow or green nasal discharge, jaw pain, facial pain, and headaches--all of which are a major blow to concentration. Your best bet? Stay home and use your neti pot, and maybe venture out, but only to see your doctor.
4. If you have pink eye. The majority of "pink eye" is viral and clears up on its own in about 24 to 48 hours. Other cases are bacterial pink eye, and you need antibiotic eye drops from your doc. Both, however, are extremely contagious, so unless you want dirty looks from your office mates, better stay home!
5. Bad back pain. You may feel like a wimp calling in sick because your back hurts, but don't! Experts say sitting at a desk all day can actually aggravate your back and make the pain worse. Instead, after a mega back spasm, spend the day at home taking it easy.
Do you abide by these "rules"? Or do you tend to dread calling in sick?-Annie
Friday, October 9, 2009
I went and listened to the Cypress String Quartet yesterday when they visited my college. If you ever get the chance to hear them, do it. They are fantastic. That's not the point of this entry though. While I was listening to their concert, I did a bit of thinking too. Music does that too me. I contemplate. So as I'm sitting there, thinking about nothing in particular, I was hit with something big for me: I get to listen to this beautiful music. (Deep, right?) I started thinking of all the great things I get to experience in life: this music, soccer, friends/family, my puppy, sorority life, college, ETC.! Then I tried listing things I didn't get to do because CF held me back: very few soccer games, a few classes (OH DARN....), a birthday party here and there, Thanksgiving dinner one year...
When comparing the lists, I realized my life is not as affected by CF as I like to imagine it is during my pity parties. Like the reaction when I told one of my friends: "Oh no! I knew a girl who had that. She almost lived through her second lung transplant... she was 17 and a week from graduating high school..." Newsflash Andrea- that isn't you. At all. You're a few weeks away from being 19, in college, and are quite healthy!
This recently epiphany, the looming doctor's visit on Oct. 20, and a recent desire to work out have contributed to my recent good health. And I'm excited to announce that it should stay that way. I'm running, working out, piggin' out, sleeping lots (usually), and am overall pretty happy about life and the stuff that's in it. And a positive attitude is a large part of our overall health!! And it doesn't hurt that today is Friday.
Wednesday, October 7, 2009
From this article, came this quote: "A second man, cystic fibrosis sufferer Brian Shivers, 44, from Magherafelt, Co Derry, has also been charged with the killi.ngs. He was granted bail because of his condition."
I'm sorry? What was that last line? "granted bail because of his condition." BECAUSE the man has CF, he doesn't spend the rest of his life in jail (probably like his accomplice will) because of CF. Let's just make a list here of the good things about CF:
- most of us are encouraged to eat lots so we can gain weight
- some people get to skip out on gym classes in middle and high school (not me though)
- we can get away with mu.rder!
Monday, October 5, 2009
This is the best I've found so far:
"Can people receiving the nasal-spray flu vaccine LAIV (FluMist®) pass the vaccine viruses to others?
In clinical studies, transmission of vaccine viruses to close contacts has occurred only rarely. The current estimated risk of getting infected with vaccine virus after close contact with a person vaccinated with the nasal-spray flu vaccine is low (0.6%-2.4%). Because the viruses are weakened, infection is unlikely to result in influenza illness symptoms since the vaccine viruses have not been shown to mutate into typical or naturally occurring influenza viruses."
Maybe Ronnie or CG can help me out on this?
Needless to say, I've gotten the regular flu shot and will be getting the H1N1 shot ASAP. But I'm just worried about everyone else putting me at a higher risk than I should be at.
Tuesday, September 29, 2009
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
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
Sunday, September 13, 2009
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
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
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
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
Monday, August 24, 2009
So I started that running routine and, except for this weekend out of town, it has worked well. I get up ~7:10, do treatment, and try to be out of the door sometime soon after 7:30. I have been taking two laps around my neighborhood running the pace of [3 minutes running, 1 minute casual walking, 1 minute brisk-power walking, repeat]. There is a small hill in my neighborhood. It's small enough that it doesn't intimidate, but steep enough you FEEL it.... oh man. And I start getting weary near the end of lap 2. But I have to keep going. I keep encouraging myself. I keep reminding myself that CF doesn't quit, doesn't take a day off. CF wants nothing more than to win me over, and I take pride in making my goal to stand in the way of some[thing] else's goal. So I run in the way of CF's goal and I keep running. If that makes sense. It's like half symbolism and half real. Haha!
In an upcoming post, assuming nothing drastic happens before then, I plan to kinda give a brief overview on my life: the part with CF, the part without, my family, my sport, my meds, everything. Just lay it all out there so there is no confusion at all about my situation.
One last thing. Hey, CF, you're not going to win this. Are you listening? I am stronger and more determined than you can ever be. You've made me this way, and for this I thank you. However, I don't need you. Please, just try and stop me from living my life. You already have and so far it hasn't worked. Even with a PICC I played physical soccer for a very important game. I push through even when others think I should quit, because of you. I'm going on to be great and you will be nothing but backgruond noise. I'm not afraid of you. Try me. I don't back down from fights, and this is no exception. The more you bother, frustrate, hurt, and try to take over me, the harder I fight back. So c'mon. Bring it. Because I'll bring it right back, 10 fold. You. Will. NOT. Win.
Wednesday, August 19, 2009
So I keep up with a few other blogs of people with CF and 2 of them stress the importance of working out daily. When I say stress, I mean glaring-in-your-face-with-a-florescent-sign level of stressing. After ~13 years of soccer and 6 years of that being premier/varsity level, I'm ENJOYING my break. Premier and varsity level... they work ya hard. And then being a goalie... basically I did everything the field players did (the running, leg work-outs, etc) AND had a goalie training (more running, arm, leg, core workouts, DRILLS DRILLS DRILLS, endurance training, etc.). Being a goalie is hard work, people, trust me. It's not for the fat kid who can't run like everyone likes to believe.
These people who are writing the blogs about the importance of working out/running when you are a 'cystic' are later in life than I am and probably wish they had started this earlier. Ok, here's where we put, as my French teacher called it, a "Sign Danger". A Sign Danger is usually placed when the French grammar is different or needs special attention. In this case, the fact that I'm learning this piece of advice from the experience of others older than myself needs special attention. When we drew Sign Dangers, she would tell us to use many colours. That's a Microsoft Paint drawing of kinda what some of my Sign Dangers from French looked like. I owned many different highlighters.
So what does this mean? I have 2 weeks left before I leave for college. When I get to college, I'm living VERY close to the intermurals center. Will I make up excuses? Or will I get up early every morning and go running before my 9:30 or 10:00 am classes? More importantly, will I start running in the morning NOW to work up a habit as I get to college? If I don't, there will be an even larger Sign Danger next to my PFT results because I didn't maintain my health. So, tomorrow, I start running again. Darn.
Sunday, August 16, 2009
Well, the lake was bliss until I was floating in the water downwind of 2 people who decided to smoke IN the water!? I'm blunt when it comes to that. Kill yourself, but don't take me with you. I've got enough lung problems without your help. Thanks.
But other than that, the lake was a success. Today, I'm VERY sore from my master tubing abilities, but it was very worth it. Now, I just wait for Sept. 2.
This is going to take a while....
Thursday, August 13, 2009
I went to gift shop afterwards and bought some of that Galaxy Slime. You know, that putty stuff that feels like it's a liquid but is more like the movie character Flubber? It's great. Here are the pictures from that adventure.
A really neat camera. That's me with my aviators on.
A face morpher thing. That's me
My friend Alissa, morphed
And Caleb without a body. Whoops. The army might not want him anymore.
As you can see, we had fun. :] Sci-port is the place.
Sunday, August 9, 2009
Sorry for thinking like that but for me, it's a brutal truth. No, I'm not counting down the days to my 35th birthday, but I do think realistically at the things my friends/family don't want to even let cross their minds. **SPOILER** Wake up people. Odds are pretty good that if a car crash doesn't take me, CF will. And it won't look at my kids when I'm older and think "Oh, what cute kids. I should let her live longer." And then CF just sits in the backseat for 20+ more years. No. Sorry. That's not how this works.
No, I'm not pondering on morbid thoughts. No, it really doesn't bother me. Sure, sometimes but isn't that normal?? But it doesn't right now. It's just something I think about because it's not like I can hide from it. I actually found it slightly amusing that I'm in my "mid-life crisis" about 20 years before everyone else. haha.
Ok. No more thoughts like that for the blog tonight. Sorry for being a debbie downer. lol
Monday, August 3, 2009
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.
Thursday, July 23, 2009
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!!
Saturday, June 13, 2009
Well wait. First a basic update: Boston was amazing (choir tour) in so many ways and Myrtle Beach (Emmons family vaca) was too in a completely different way. I loved both trips and had tons of fun at each. Boston: Spiritual growth, friendship growth, hard work in God's name, outreach, service, music and STOMP, and a whole new place. Myrtle Beach: "family" growth, deep chats on the beach, parasailing, shopping, doing beachy-things, people watching, and just a really awesome time with a family I feel I'm a part of.
Ok. Now it's time for deep thoughts. (Kid, brace yourself for part of this...) [And people, this is just me talking. I'm not looking for an argument, just stating my own personal thoughts. Don't be offended by any of this. Don't like it? Don't read it.]
Churches and religion can be such a touchy topic for many people, and while I may get defensive about it sometimes, I still find it very interesting to read up on. While in Boston, I went on a prayer walk route that passed two Jewish temples, a Kabbalah center, and a Devotional Elementary school. The Jewish temples were not like anything I've seen here in Shreveport. They were large and majestic, towering over neighboring buildings. We had planned to enter one if we had had more time, but unfortunately we didn't. The Devotional Elementary school was the only Bible elementary school in Boston. We're not sure of the exact teachings that went on because while sitting outside of it, we noticed children of obviously differing faiths on the playground. While this surprised me seeing as I wouldn't let my child attend a school that spent time each day teaching out of the Qur'an or the Torah, seeing as I'm a strong Christian, it also reminded me that there are people of other faiths at Loyola, for example. Just because they are forced to sit in Mass doesn't mean they are forced to participate. It is still a mind-blowing concept to me. The Kabbalah center was very interesting to me. I had never heard of Kabbalistic teachings until this prayer walk. There was a sign outside the center to explain their teachings. Here is basically what it said, "Kabbalah — the world’s oldest body of spiritual wisdom — contains the long-hidden keys to the secrets of the universe as well as the keys to the mysteries of the human heart and soul. Kabbalistic teachings explain the complexities of the material and the nonmaterial universe, as well as the physical and metaphysical nature of all humanity. Kabbalah shows in detail, how to navigate that vast terrain in order to remove every form of chaos, pain, and suffering. For thousands of years, the great kabbalistic sages have taught that every human being is born with the potential for greatness. Kabbalah is the means for activating that potential. Kabbalah has always been meant to be used, not just learned. Its purpose is to bring clarity, understanding, and freedom to our lives — and ultimately to erase even itself." (Ref.)
Interesting. Especially that last line: "and ultimately to erase even itself." Wow. The thing about this teaching is that is sounds so promising, so wonderful, so.... so sad. It's just sad. Searching for truth within yourself will be in vain because we don't hold the Truth. But that's a whole 'nother topic that I'm not going to post because I've already stepped into some touchy stuff. Moving on.
On choir tour, we have this thing called Senior Affirmation. This event is every evening where one senior has to sit in front of the rest of the choir for a while and let everyone say affirming things about them. It's sometimes very emotional because it's a way of saying goodbye too. As I sit and listen to everyone affirm the seniors (and myself), I hear one phrase so many times in various ways: "You've been through so much." That should not be the case. As I started my list, I counted for sure 8 out of the 15 seniors who had been through, or are still going through, something tragic, extremely difficult, and burden bearing. It ranges from loss of parents, serious sibling issues, dea-th, alcohol, depression, and then of course me and my health. I was floored when I really sat and thought about it. This isn't even counting the underclassmen who are dealing with the same things. Why is life so rough that by age 18, we've already been through so, so much?? Is it to shape us to the person we are supposed to be? To build character? Or just drawing the short straw? Jeremiah 29:11 says that God has plans for us, not to harm us but plan to make us prosper. I fully rely on that, but when I can't see what God sees, I have trouble understanding why we go through "so much."
I've started a scripture journal. I have these moments, struggles, and friends and sometimes I just need to pull a scripture out of the air about [insert topic]. So I've created this organized compilation of scripture so that when I need a verse about [worry, dea-th, God's faithfulness, strength, etc.], I have it on hand. It's been a blessing to create it (I still have a long ways to go) and I encourage everyone to do the same. Even if you feel like you aren't that close to God and yet have the desire to be, this is a *fantastic* way to indulge in His Word. To find these verses, I pull from my daily devotional, Sunday School, the sermon, Hallmark cards, ANYWHERE I find a valid scripture that fits under a category. I have a long list of topics so let me know if you need ideas or a verse. :]
While sitting on the beach this past week, I asked my dear sorta-sister, "What makes the beach so beautiful?" Feel free to answer but I have mine. It's the same thing that makes bad words bad and parachute pants popular in the 1980s: because society says so. When generations of people have said the beach is romantic and beautiful and revolved honeymoons, cards, and "long walks on the beach" as a romantic notion for so many years, it's ingrained in our minds that it is so. Don't get me wrong: I'm in the same boat because I think the beach is gorgeous, but I was simply asking, "Why?"
This is quick and simple. Betsy, you might want to answer this part for me if you want. God commands us to follow the laws and authorities placed over us (as long as they don't conflict with God's commands). It would be a sin to disobey or break the laws seeing as that's not respecting authority. I drive without shoes on, which is against the law. Am I sinning every time I get in the car and kick off my shoes to drive? Do Catholics who go to confession remember sins like that too when asking for forgiveness? I'm serious though, is that a sin?
(MRE, this is the part you need to possibly skip over?)
Ok, I'm not going to give background on this because it's not my place, but I got to thinking that in a weird, twisted way, dealing with the loss of a sibling very early on is in a way like dealing with a chronic disease. There is a situation I'm aware of where a friend of mine lost her older sister before she (my friend) was born. A few months before she was born, actually. So the question is raised: when asked if she has any siblings, is it a yes or a no?
Sometimes I have those days where I cough more than usual for me. As any good caring person would do, they ask, "are you sick?" Is it a yes or a no?
While my friend may not have a sister living, she HAD a sister. In her place, I would answer "no" in the same way I say "no, I'm not sick," simply because I don't owe anyone an explaination of my health nor does she her family situation. [To my friend:] In the same way that by me saying "no, I'm fine", my health problems don't disappear, neither does Danielle when you say "no, I'm an only child." Just my 2-cents. :]
END DEEP THOUGHTS.
Whew it's 1 o'clock
Wednesday, May 27, 2009
So far, nothing really seems different. It hasn't really sunk in that I'm *DONE* with high school. Not yet. Sometimes, like when we were back at the school while everyone was in class and we were pulling a senior prank, but not most of the time. It's just... strange.
It's a little scary because Magnet was so comfortable to me and I enjoyed that warmth of knowing all the teachers and most of the students and my way around. Now I'm going off to a new school in a new city with new teachers and new students. I'm up for the challenge, don't get me wrong, and I'm looking forward to meeting and making new friends, but it's a little intimidating. Luckily, I'll know enough people there to get around campus pretty easily.
First post-surgery sinus infection. NOW I finally understand how sick I used to feel all the time without realizing it. Wow, this sucks. I'm so drained of energy and my throat is me. Plus my sinuses hurt again. Haha how did I live like this for so long??
OH OH! I also learned one other thing: try hard in school. All 4 years of high school. They really, really, really do matter. All of them. Make straight A's. Just do it.
Saturday, May 23, 2009
Yes, I'm ready for this moment of my life, and yes I've been waiting for it for quite a while, but it's like Christmas when you're little: it seems like it will never actually get here. And then it does. And it's weird. See, it just always seemed natural for those older than me to be a step ahead of me. Now I'm "catching up" to them by being in college too. Wait, hold on. COLLEGE?! I have never been nervous about college until this moment. My stomach just did flips. I can't imagine me actually in college. It doesn't seem like I should fit in. I'm too young... right? This is so weird!! I'm 5 months from being 19, less than 4 months from starting my fall quarter, and graduating high school in less than 24 hours. This is nuts. Absolutely nuts.
Time to rest up because the last few days have been insanely busy and tomorrow is no exception.
Monday, May 4, 2009
I have 8 days left in high school. Let me repeat that: 8 DAYS. :D
This past weekend was prom. If I had a picture, I would post it. All the pictures are on 2 other people's cameras. But I did steal one from facebook. Hee hee. I'm so bad.
Prom = best night ever. I can't even begin to describe how much fun it was. I finally got the nerve to actually DANCE. It's about time, I know. I've been to 3 homecomings and 4 proms. You'd think I would have danced before. Pft. A little. But this time I DANCED and with 3 of my best friends and their boyfriends. It was so much fun. SOOOO much fun!
Lots of things have been going on (Sail-a-thon, for example) and I have really been enjoying my last few weeks of high school. Life is good. Life. Is. Good.
Wednesday, April 15, 2009
Except for the minor little setbacks of feeling really sick suddenly sometimes, I am improving drastically. A chest x-ray today showed the pneumonia is almost completely gone! YAY!
I'm working on a new quilt. Crazy, right? It's for a friend who is having twins, so I'm making a second one after this. I'll post pictures when it's pieced together.
I played Apples-to-Apples for the first time ever. That game... is FUN. With the right group of people, it is absolutely, down-right, hilarious. And I played with some of my Small Group s and my 2 leaders.... a fantastic group for this game. Fun evening. Love those s.
Nothing else really to mention I guess. Dang, I need to finish erasing everything in the giant ACT practice book for Emmons.... it's sitting on my desk so I don't forget.... hmmm.... I'll get to it eventually, kid, I promise!
Time to enjoy the rest of my Spring Break!!
Friday, April 10, 2009
I mean, yes, it's good but I'm not looking forward to it at all. He said it would not take very long, a few minutes, but that's a few minutes toooooo looooooong!!! I'll let ya know how that goes.
The rest of Good Friday is up in the air, aside from the Good Friday service at my church. My whole Spring Break is up in the air. I mean, I've got a book to finish, some work to do in the lab, and a lab to write, but other than preparing for state science fair, my week is free. :]
I know I already posted this, but I'm so glad to be home... so glad to be back. I've never enjoyed school more than those last two days. I was so happy to just be back to my "normal" because being in the hospital is NOT my normal. And I missed normal.
Tuesday, April 7, 2009
As far as the medical junk goes, PFTs were down, weight is down, but pneumonia is starting to clear up. BUT I still got to have my PICC line pulled so my arm is free once again. But man, it HURT to have this one pulled. It didn't help that while my sweet nurse was trying to cut my stitches, she had someone standing over her saying "oh no no. Not like that!" That did not help anything. However, once she cut both stictches, the only pain left was just the "after-throb."
Glad to be home,
Monday, April 6, 2009
"Parents and doctors both worried that I would catch pneumonia from just lying there all the time."
Dun dun duuuuuuuuun. Is that foreshadowing or WHAT? Guess who did end up getting pneumonia? Yep. Me.
Last Friday, the day after posting about how great I was feeling, seriously, 12 hours after I had posted that, I returned all the food I had eaten on Thursday to the porcelain shrine. It was a bad, bad day.
I spent from 9..ish until 4ish in the bed, crying, miserable, nauseated (or throwing up) with no relief. We even got some medicine for nausea, but it didn't work. Around 4 we realized I needed help so my parents rushed me up to the ER at Schumpert, where they had assured us there would be no wait. They lied. I sat in a chair for a good 15 or 20 minutes feeling like I was about to die. I was also denied at the children's ER, which had no wait. Once I was finally seen, it was discovered they my heart rate was 171, my blood pressure on the floor, I was EXTREMELY dehydrated, and I had a fever. Hmmm... thanks for making me sit and wait. I get wheelchaired to the triage where they were surprised to see I had a PICC line. "I was here 2 days ago, on peds." The nurses were glad to not have to try to find a vein on me!
After a few nurses come by and they got some fluids running through me, we finally see a familiar face: a guy we know from church is one of the ER doctors. He was as shocked as we were.
Five hours later, we are admitted into a hospital room. I had gotten an armband that said "511" so I knew I was going to be back on the pediatric floor again. YES. As I'm being wheeled away, someone asked what room I was going to. "511" "Oh no you're not. You're too old. 688 for you." What?! 2 days later I'm too old for the pedatric floor where I just WAS?? So I can't get continual care from the people who just took care of me? K.........
6th floor medical tower is no where near as comforting as the peds floor. But I guess that's more incentive to NOT return.... lol
As a side-note, a nurse on the peds floor is also the mom of a teammate, and one of my biggest fans. She printed out the "policy" on age limits for the peds floor. I am allowed to stay through my "entire eighteenth year." So technically, I really should have been on peds again..... but "change is hard, isn't it?" (rude receptionist told that to my mom on this floor)
I've enjoyed my company ranging from family members, to friends, to 4 grown men in tiaras and tulle skirts rapping to me, one of whom I'm proud to say is my father. :]
I just went and did PFTs (pulmonary function tests) and if they are stable still, and my chest X-ray shows improvement, I'm having my PICC line pulled and being shipped home tomorrow morning!!!! I hope that's the case because I'm really, really, REALLY tired of being here. Sad to say, but I'd rather be at school.
That's all for now. Signing off.