Every Life has a Story to Tell

Nov. 14, 2011

2011-11-14T10:53:00.003-06:00

Dear readers/glancers/everyone:

I apologize for being absent for about a month and a half. I either never knew what to say or didn't have time to type or just didn't feel like sitting at my computer any longer. I don't even really think I know what to say now, but here I am.

I had my doctor's appointment on Oct. 19. It went alright. My weight was up about 3lbs so that was fantastic. I go in for PFTs and after one blow, the machine breaks. So to be honest, I have no idea what my PFTs are right now. That makes me a little nervous, but since my first try was around my baseline, they didn't fret about numbers and sent me on my way. *whew*.

I think ultimately I will phase the blog out of my life for future employment reasons. I don't want it to negatively affect if/where I get a job. My thoughts and feeling about my health/disease are becoming more solid and detailed and I don't feel like they all need to be posted here. On that same note, I don't feel like my personal life should be available for all to read either, so I don't feel the need to post about it either. It's the same reason my facebook page is more barren than it used to be. Those who need to be informed, or who I feel should be informed, about my life will be. Everyone else will find out through the ever-informative grapevine.

I love my blog, don't get me wrong. I'm actually really proud of it. However, I just don't have the "bug" to keep up with it. I wish I did, but I have so many other things going on that are important to me or are demanding of me that typing up my feelings and thoughts and memories just aren't in the top tier of priorities. I would much rather be spending time with the people who are important to me.

I do have one more thing to write about, and I may be back from time to time, who knows. I wanted to write on the experience of moving in with 3 girls I did not know and trying to slowly introduce them to and explain to them my health "stuff" without being blunt or awkward or weird. It's an art. And while I have no real advice on how I did it, somehow it worked. I think the funniest moment was when one night I was doing the Vest and one of my roommates realized what I was doing. She knocked on my door and I shakily yelled "come in!" While she stood in my doorway she made a comment that made me laugh: "I want to touch you!" She then proceeded to dive onto my bed to feel the Vest and how it shook me. My other roommate then realized what was going on and ran into my room too saying "me too!!" and came to feel the Vest as well. After a few seconds of that, and some time of them begging me to talk while being shaken, they left. Still regularly, that first roommate likes to come in my room while I do the Vest and begs me to talk to her. I think overall my roommates have acclimated to me having multiple machines in my room and a million meds to take quite well, thankfully. I was really nervous at first, but alls well.

It's final week so I may or may not post again soon. I'm really not sure to be honest. We'll see.

-Andrea

Where did I go?!

2011-09-25T21:02:00.002-05:00

Oh hello again blog! Sorry I kinda forgot about you... things have been busy, SHOCK I know.

One of the things I added to my schedule is... RUNNING. Yep. I'm running at least 2 miles a week. It's not much but it's a start. Hoping to bump it up this week a little. Getting ready for that doctor's appointment!!

Swamped with school, future, friends, sorority, and everything else I cram into my crazy weeks! It's been fun though. And all is well!

Great Strides walk coming up in 2 weeks!

Sorry I don't have much to say! Just glad to be BACK!!!!!!!!

-Andrea

Back to the grind!

2011-09-09T13:47:00.002-05:00

Y'all I'm so happy to be back. Actually, that's an understatement. To have my life back means the world to me. While I don't get to really participate in formal recruitment due to missing so much, it's ok because I have my friends and class and my freedom back!! My arm has almost completely healed already, however the blisters left scars and I have the usual "arm button" (like a belly button) from the actual line, which still has a little more healing to go. I'm feeling pretty good too. I'm a little tired from jumping right back into recruitment and school, but I'll have time to come up for air in a few days.

School looks like it's going to murder me this quarter, but I'm really not stressed about it. I really feel like I can handle anything. The summer quarter, flying by so quickly, taught me how to stay focused and work even when I'm really and truly tired of doing homework. That's what is going to get me through this quarter. I'm taking a full load (12 hours for a quarter system; that's 5 classes for me) and it will be chock full of busy work, homework, papers, and tests. But I can do this. That's not to say I won't have moments where I just cry into a kind shoulder about how much I hate school and how tired I am, but I can do this! I've already found that mentality of "school will never end, you have several years left, suck it up and go" so hey! What's another 3-5 years?....

Time to get a little homework done (yes, already) before recruitment this evening!

My "arm button"!

-Annie

PICC Tales- the last full day (Picture heavy)

2011-08-31T14:40:00.010-05:00

I promised pictures, and here they are! Time to finish out my PICC tales for this 2 week session.

So since I've been home, I've had my dressing changed twice. Not fun at all. Each dressing change, due to skin complications, sent me to the edge of tears/passing out from pain. One of my stitches has also been bleeding during all this time and that caused a lot of pain when it had to be cleaned too. My home health nurse Bridget changed the dressing on Thursday, because I developed a spot of something underneath my dressing and it needed to be freshened up. By that night and Friday morning, it was completely ruined and needed to be changed again. Turns out my skin had blistered under the dressings and those blisters had popped under dressings #2 and #3 and required a dressing #4 on Friday. Luckily, this last dressing has lasted. My overall rash is completely gone leaving me with rough skin on my arm and my face, so I'm getting the spa treatment tomorrow after my PICC comes out! The only place that still itches is under the dressing where it hasn't had air to heal.

The broncho-spasms have quieted down thankfully and have not been as bad.

One thing I haven't mentioned that some of you know already is that my parents left the country last Saturday and returned this Saturday! They had their 35th wedding anniversary cruise planned out for months and my hospitalization almost made them cancel! Luckily, after lots of discussions, we worked out a deal where I do the IVs myself (see the picture of the extension below) and my sister-in-law and nephew live with me for the week my parents are gone to help get me through. I'm glad my parents didn't cancel their cruise and trust me enough to let me check myself out of the hospital on Monday and take care of my IVs while they were gone. It was a huge step in me being independent (as if I wasn't already lol) and them trusting me with my health even more.

So, I promised you pictures so here they are, with captions and explinations to walk you through kinda what I've been handling and going through.

Warning: I do have pictures of the exposed PICC (well almost exposed) and blistered skin.

My 3rd dressing, ruined thanks to my blisters.

The blistered skin and uncovered PICC (with Biopatch still on)

The 4th and final dressing- layers of folded gauze to protect the skin and the PICC

The line extension- what's made it possible for me to be independent this week!

Two of my meds in the compression balls- Tobra (L) and Fortaz (R)

Zyvox- my third antibiotic which had to be hung on the dreaded IV pole

I thought I got to leave this thing at the hospital.... nope. I did learn how to set up an IV bag and line though, which was pretty cool.

This was the cool device that set the mL/hr rate. Very cool.

Mom made me this cake when I had 3 days left!

And on a completely different note, I got my new Vest today!

I decided not to take pictures of the alcohol prep pads, the saline flushes, and the heprin just because it was pretty standard. But those have been very common sites at my house since I flush before, after, and in between each IV dose, clean with the alcohol prep pads in between everything, and hep lock with heprin after each IV session ends and flush the unused port for that day with saline/heprin each morning and night. Since this PICC had duel ports, I had to switch them out each day and replace my extension every 3 days. So much to remember but once it became routine, it was no big deal. However, I am very tired these days but I think once I get back in my normal day routine (you know, the one that DOESN'T involve IVs) I won't be so tired! My PICC pulling appointment is at 10am tomorrow (Thursday) morning and my facial is that afternoon. I'm almost done!

See you on the other side!

-Andrea

No pictures still...

2011-08-24T22:39:00.003-05:00

Shame on me! I haven't gotten around to taking pictures yet. Still adjusting to home life.

7 more days and I'm DONE. I am very ready to have this PICC out... it's the been most frustrating PICC yet. It still hurts a week later and has been bleeding today. My home health nurse is checking on it tomorrow. I think it's just the extra stitch in my arm since they messed up the first time.... ugh.

My rash is still just as itchy as every.

I've also developed a bronco-spasm with one/all of my IVs. Great. So now it's hard to breathe when doing my IVs. Again, most frustrating IV case so far.

Thank you to EVERYONE who has brought me food, dropped by, or called/text to see how I'm doing or if I need anything. Yall are the best and I wouldn't be able to do this without you.

Guys, I'm tired. This is exhausting. I don't remember this being so tiring. I guess that's what happens when you get old, right? Yuck. I guess the 5am-11pm thing isn't helping. Oh yeah, I'm starting treatments 30min before my IVs to help manage/prevent the bronco-spasms.

Still no official ruling on the arm allergy, by the way. I don't think I'll ever really know.

I have guests tomorrow and my IV is almost done so I guess I'll call it a night.

-Andrea

Home IVs- Night #1

2011-08-22T23:51:00.003-05:00

Hello all! I think I'm doing well keeping up with the blog while I have all this "spare time"! Tonight was my first night home on IVs in right about 2 1/2 years. Learning curve! Luckily it did all come back pretty easily. The only curve ball is that one IV that has to be hung from a bag on an IV pole. Honestly, I feel like a nurse having to set up an IV bag, but it's not really bad. I was nervous doing it the first time, just since it was new, but my home-health nurse wrote out step-by-step on how to do it and my sister-in-law, who learned it with me this afternoon, was walking through it with me. We had no problems and I feel confident now in doing it tomorrow morning. Luckily though, it's not my 5:30 dose!!

I'm doing treatment now, so late, because I spend most of my IV time in the den being social. I'm ok with staying up late to do treatment and getting up early to do IVs/treatment. I figure if I need to, I can grab a nap during one of my 2 breaks. But I did notice something: my motivation to take care of myself was reignited 10-fold during my hospital stay. I was reminded how WORTH IT it is to take care of myself every day so I don't have to go back to the hospital any time soon. It flew by, honestly, and I didn't suffer *too* much, so it wasn't a horrible experience. However, I wanted nothing more than to redeem myself, go home, and take care of myself. And it's a good thing I'm rejuvenated with this because right now, my medicines consume almost the entirety of my time awake during the day. From 5:30am-11pm (plus treatment if I do it after the IVs like I'm doing tonight). But my dear friends, hear me loud and clear...: IT IS 100% WORTH IT. I want to have my health and have my life and if I have to devote some time and pain and discomfort and frustration to GET more years added to my life, then so be it. I was blessed and cursed with this disease and I have to take the bad with the good, suck it up, and handle it with a smile. One of the best parts of my hospital stay was the many times I got to tell a nurse/doctor/RT/anyone how I haven't been in a hospital in over 2 years. Their reaction was motivational to me. I want it so much more than that. I want to boast about 5 years or 10 years. It sounds crazy, but I believe it's doable. But only if I don't get down about myself again.

****If you are reading this, and you hear me complain or read about me being down about having to take care of myself, please take this last post and rub it in my face until I remember what these 2 weeks felt like. Thanks!****

I'm also upping my Vest time from once a day for 15min to twice a day for 30min. I really don't like the Vest, so I'm proud of myself for this change. It will take some dedication and a little push from those closest to me, but I know I can stay with it. IT'S WORTH IT IN THE LONG RUN.

While in the hospital, BORED, I stumbled upon a website that sends an email to your future self. I don't remember when mine will be delivered, maybe Nov of 2013, but I told myself how much I hated being stuck in the hospital and how I needed to do everything possible to stay out. Maybe I'll get that email at just the right time in my life...

Allergy update: so we're really still not sure what's causing this, but Sarah and I think it might be a combination somehow of the betadine and one of my medicines. We think this because the rash is almost completely only where the betadine was put on my arm, but it only flares/itches when I have IVs flowing. It's so weird. Either way, I have this prescription topical cream that did wonders for the itching this evening.

I think that's all for tonight. I know I still have yet to get pictures up, but I will soon. Just hang tight!

Thanks for reading, as always.
-Andrea

Hospital Days- Monday

2011-08-22T11:48:00.003-05:00

Well!! This post is a lot different than I expected it to be, in a good way! I'm writing this from my couch at home!!!!!!!! (That sentence can't have enough exclamation points on the end of it) Y'all, I'm so excited to be home. So so so excited!!!! I now have my dog home from prison (boarded at the vet) and my afternoon dose of my IV drugs completed. I'm all over this, no problem.

We think I'm actually allergic to the betadine and iodine, not the dressing. But to be sure, we're going to keep using this new dressing and no use betadine/iodine anymore. I have some prescription cream that will help with the rash/itching thankfully.

I will get pictures of my medicines now that I'm home. 2 of them are the imploding balls and one is a bag I have to hang on an IV pole. I also have an extension on the line that allows me to do all of the IVs myself.

Ok I'll keep you updated since I'm just going to just be watching Netflix and playing cards with friends/family all week. Pictures coming soon!

-Andrea

Hospital- Quick Sunday Update

2011-08-21T12:19:00.003-05:00

No real news here. Waiting to see the doctor on the results from the levels test again after they changed the dosage. My rash hasn't improved any. I think it may be getting worse....umm yep it's worse. And now even itchier!! At least I have hydro-cortizone cream to help.

Still hoping/praying I go home on Monday! I'll post updates when I have them, of course.

-Andrea

Hospital Stay- Saturday

2011-08-20T12:12:00.004-05:00

I have developed a skin allergy to the clear dressing for the PICC line. So as of late last night and now still into Saturday, my eyes are puffy and my left arm (where the PICC is) is covered in red itchy bumps. They gave me benadryl last night and today but it's not helping too much. They also changed the dressing to a more cloth mesh dressing instead of the clear adhesive.

Allergy

New dressing

My tobra levels came back and they were too low. So instead of getting a tobramyacin does every 24 hours, I'm getting a dose every 8 hours. So now I have 8 antibiotic doses each day instead of only 6. They are going to check my levels again after 3 more doses and if they are good, I *might* be home by Monday afternoon, Tuesday for sure. If the levels still aren't good, I have to wait another 3 doses to try again. Each retry is two more needle sticks in my arm.

I'm getting a little homesick.

I was a specimen for the med students today. It's a learning hospital. I don't like that. It was a serious blow to my self-esteem today. After talking to Mom some, and getting a nice shower, I feel a little better.

I'm standing and walking as much as possible today. For instance, I'm standing up while typing this post. I'm so sick of being in that hospital bed. I know that it's not helping me get better, so I'm up and about now. Standing for about 10 minutes has already helped me feel like I can get through this feeling good about everything. I'm fighting.

-Andrea

Hospital Days- with some pictures!

2011-08-19T17:15:00.007-05:00

Well these last few days sure have been eventful! Let's recap:

Wednesday, August 17, 2011
I was admitted on Wednesday and immediately had a peripheral IV put in my left arm. I was later started on the doses of my 3 antibiotics: Tobramyacin, Zyvox, and Fortaz (I'm mostly sure on these spellings!!). They are taken every 24 hours, 12 hours, and 8 hours, respectively. (6am, 8am, 2pm, 6pm, 8pm and 10pm) Oh boy am I going to be busy when I get home taking care of all of this! Other than getting moved in and settled, Wednesday was pretty quiet. Oh, I did have a chest X-ray taken too. I mentioned before that one major difference is the care that the RTs take with each patient doing treatment and hand CPT 3 times a day. So I spent my evening treatment being tag-teamed by two RTs beating me, and while I'm not yet again really used to hand CPT, it went well.

(The peripheral)

Thursday, August 18, 2011
Rise and shine at 4am thanks to a youngin' across the hall very unhappy about something. Did I mention I love being on the ped's floor?? No I really do, but that's the one downside... screaming babies!! Oh well. It's a small price to pay. I slept poorly until 5:30 when a familiar face walks in my door for morning CPT! Remember Gaelin, my friend from middle school, high school, and my freshman year roommate? Her brother-in-law is an RT up at this hospital so he came to visit/beat on me! It was quite a nice surprise and I was glad to see him. Around 9am, I was asked to move rooms! Turns out I was placed in the only available room that day and it has special equipment, so they like to keep that room open when possible. Mom had to work out of town on Thursday, so I thought I was going to be alone most of the day... boy was I wrong! Visitor after visitor after visitor! It was a ton of fun. Bad part of the day? Getting my PICC placed. It was so much simpler at the other hospital that I was spoiled! Here, I was a wreck. And post-PICC placement, I had to have a chest X-Ray again to check the placement. I was sick in that room due to stress, anxiety from the PICC procedure, and not eating enough that day. Luckily, I had one of my best friends waiting for me in my room when I got back. The right visitor will do wonders.... I also had a 3rd year med student drop by, an old friend too! He just happened to be doing his ped's rotation this week.
We were hoping that by my evening antibiotic doses, the radiology department would have been able to review my x-rays and I could have used the PICC, but the server was down (ahh, the digital age...) and so I had to use the peripheral again. It hurt, a lot. My veins were screaming, but with a little help from a friend, I made it through another dose. The late evening brought good news of using the PICC, so they flushed it and pulled my peripheral (YES!). I slept much better last night.

(the PICC)

Friday, August 19, 2011
I was awakened at 5:30 again by my same friend RT for my morning treatment. 6am meant antibiotics, but since I was using the PICC, it didn't hurt very much. Today has been very lazy and quiet, I've actually enjoyed it. After mom and I chatted with the case worker about getting home IVs set up, she went to work. I've spent the afternoon/early evening so far catching up on TV shows, writing this post (which is probably as long as my last several posts put together!), and veggin' out until my aunt gets here with my Buffalo Wild Wings dinner! No hospital food for me!!

My PICC pull date is set for Sept. 1 assuming my Tobra levels are good. They took the trough level at 2 and the peak level will be taken at 9. Prayers for the right numbers so I can go home on Monday! I miss my puppy and my house, even though I'll do there what I've been doing here: nothing. I'd rather do nothing at my house than at a hospital. Although I will say, as hospital experiences have gone, this one has been pretty smooth, and I'm so grateful.

Have any of you had the PICC with the two ports before? What's the point? Everyone I've asked just tells me "It's the exact same as the single one" so why the extra hardware? Just curious.

I'll keep you updated!
-Andrea

We have WiFi!

2011-08-17T20:47:00.003-05:00

I knew there wouldn't be a surviving hospital without WiFi. Ta-da! An evening post.

I'm on 3 IV antibiotics this time instead of two and the current one is making my face tingle. Weird. I just looked it up and that is a side-effect, so I'm not worried. lol

This is a new hospital for me but it's working out really well. So far so good. They even have, get this, HAND CPT 3 times a day. I'm floored. I'm used to RTs dropping off a Vest and leaving. This is much better, medically. And the people have all been really nice.

My arm still hurts from my peripheral (I'll get a PICC later) so I don't want to type much.

Although I'll leave you with this: Fancy Jello

-Andrea

"When"

2011-08-17T12:19:00.002-05:00

The "when" of my hospitalization has been decided: today! I'm glad to finally have a plan in place, it helps with my stress levels. Also, due to some already set plans, I will be more in charge of my home IVs than ever before. I know I can do this, so I'm not nervous.

I'm going to a different hospital than ever before, and I don't think this one has wifi (booo...) so plan A is not to take my computer with me. If they do have wifi, then Mom will bring it later. Either way, it's time to restart my "No IVs" stats from the 2 1/2 years I went without back to zero. I had a good run and planning this next run to be even longer than the last.

So if there is no wifi in my room, farewell for several days! If not, I'll post tonight probably!

Keep me in your thoughts/prayers if you don't mind. I need all the help I can get!

-Annie

First update-

2011-08-16T19:07:00.002-05:00

Hospital and IVs are for sure. "When" is the question. Family meeting tonight. I'll let you know when I know when I'm going in for sure.

Thanks for everything dear friends.

-A

30 minutes

2011-08-16T08:32:00.001-05:00

30 minutes until my appointment starts. Nerves are getting the best of me.

Here we go.

-A

2011-08-13T23:13:00.004-05:00

I had a very frustrating night last night. At 6:45 Saturday morning, I awoke doing my absolute best to ignore "the cough." You know, the cough that means I'm coughing up copious amounts of blood. Maybe, in my delirious state, if I ignore it, it will go away. WRONG. But the real kicker in this situation is that I'm not home. I'm with family in Austin, TX, sleeping on a couch. Waking up scared, sick, and still drowsy, I'm not thinking straight. Not to mention I'm really nauseated from coughing so much/coughing up blood/swallowing more blood because I have no where to spit it out. I start an albuterol and realize that I am going to be sick. Luckily (I think) I wasn't, but and I finally finish my treatment and fall back asleep. However, the most frustrating thing about this situation is that I'm NOT on antibiotics, which in the past has been the only time this hemoptysis has occurred. And I took my Vit. K that day. So now I'm actually clueless as to the cause of this, and that scares me. Now I'm planning ahead though. Along with my nightly glass of water, I'm keeping an empty cup next to me in case this happens again tonight... I really hope not.

My doctor's appointment is in 3 days, and to be perfectly honest, I feel awful. Just terrible. I'm afraid I haven't improved enough to my doctor's satisfaction and I'll be sent to the Hole for the first time in almost 2.5 years. I've actually come to terms with it, really. Worst case, I'm right and I'm not shocked. Best case, I'm wrong and I'm thrilled I don't have to go!! My only real hope is that I'm testing out hypertonic saline for the first time at my appointment so maybe they'll let me slide again, but I think I've slide by long enough. Tuesday will be the test. Obviously, I'll let you know the results.

On a lighter note, I'm getting some good quality time with my family this weekend. I haven't seen this brother/fam since our May crawfish boil so it was long overdue. And my niece is growing so quickly!

OH! I'm done with summer school!!! I couldn't be happier to have two more classes out of the way. And with one of those classes came the idea of a different future career than originally planned, and it's worth looking into! I may be doing grad school instead of PT school! May. I don't know what the future holds yet, obviously, but I like having serious options. We shall see!

My family lately has spent a lot of time watching old home videos. I've been watching videos from when my oldest brother was crawling to when I was around 9 years old and everything in between! Birthdays, holidays, sports, and then just those fun times playing as siblings at the house. It really was fun seeing people/pets who have passed away that I miss dearly and watching the memories I don't have, or times when I wasn't even alive! It really has been fun watching these. Thank goodness for VHS-to-DVD converters!!

I guess I should call it a night here soon. I'll keep you updated on my doctor adventures on Tuesday.

-Andrea

This week

2011-08-09T09:40:00.002-05:00

This week, my last week of school:
4 tests
4 quizzes
2 projects due
1 homework assignment of 40 problems
and only 2 classes.

Pray for me.

See you on the other side.

-A

Class in 30

2011-08-03T12:45:00.003-05:00

Hi! I have class in 30 minutes but I have enough time to get a post in!

So right now my apartment is just me and one other roommate. We were suppose to have another girl move in on Monday, but she never showed. I guess we scared her off... lol

Summer school ends next Friday! Yay! Then my crucial doctor's appointment the following Tuesday. Cross your fingers people, this one is important.

I'm busy with getting ready for formal recruitment too, on top of school and health. I enjoy it though, so no complaints there. It's just busy! Lots to get done, not enough time it seems.

Going home this weekend for some family time! I can't wait. I love going back home to visit when I'm away.

I have a kines test tomorrow on muscles of the hip joint, knee joint, and ankle joint and then a physics test on Friday on... I'm really not sure what the topic is even called. Stuff. Busy!! Lots of studying, at least 2 tests a week, this week has 3 for 2 classes. And a project due early next week!! Now do you see why I haven't been posting much?!

I got a new laptop!! I forgot to mention that! My old one was toying with me about kicking the bucket so we helped it along with a sale that came to Best Buy! I now have a nice speedy laptop that I love.

The boxer puppy is getting big and strong!! But I love having her around. It's nice to have some canine company.

Ok class in 23 minutes, but I want to do treatment too so adios!

-Andrea

Moving and School

2011-07-30T12:24:00.001-05:00

I haven't forgotten about the dear blog. But I'm moving again today and then school is really picking up speed. I'll be back soon. Sorry!

Doc appointment in 17 days.

-Andrea

Internet's Back!

2011-07-21T16:14:00.003-05:00

So I haven't been writing for a few days but this time it wasn't my fault!! My apartment's internet was mysteriously down, but now it's back!!

So first things first: SIX FLAGS AND SHOPPING!!! Mom and I had an absolutely fantastic time. We arrived at Six Flags when the park opened at 10 with a game plan. Mom had pre-purchased a Flash Pass, and it was the best! You know how you wait and wait and wait in line forever and then just when you think you're about to go get on the rollercoaster, someone cuts completely in line? That was us. And it was awesome. We rode every rollercoaster at least once, all of them twice except for the new Texas Giant. We didn't have special access to it and the line was crazy long. But we rode it once and it was fantastic! They did a great job making it smoother! We rode my favorite ride The Titan twice. Love it love it love it. I could do that all day.

We left the park at 10 when it closed. We had a few hour break in the middle but we were there for about 10 hours. Crazy, I know! And even though I'm on an antibiotic that says "avoid prolonged exposure to the sun", I didn't burn. Side-effects don't ever seem to affect me!

The next day we went to Grape Vine Mills Mall and shopped from lunch to until about 4 or 4:30 before heading home. All in all, it was a great trip and I'd go again next weekend if I could!!

School is ok. I'm doing well and enjoying my kinesiology class, but my physics class is still hard for me. I have another test tomorrow (procrastinating by blogging!) and I should do better on that test.

Things are definitely better since getting back to Ruston even if most people aren't here. I'm still having something to do (school) and enjoying it. I'm also getting to spend a lot of time with my roommates and I'm really glad. I love their company.

*sigh* I guess its time to get back to studying. Time to get enthusiastic about physics!!!.... or try to.

-Annie

Quick Update

2011-07-20T13:06:00.002-05:00

Internet has been down for 3 days over here. And of course it comes back on right before I have my afternoon class. If it's still working when I get back, I'll write a post! Keep your fingers crossed!

-A

It's Tuesday!

2011-07-12T09:43:00.004-05:00

Like my title? Ha I couldn't think of anything else to put.

So this year I'm in a new apartment with new girls and I love it. There are 4 of us and 2 dogs. Seriously, I'm thrilled. I'm a MAJOR dog person, it's insane. In a month, two of the girls will be leaving, along with one dog, and I'm sad to see them go. We've all been getting along great. I'm so glad that at least one dog will be staying though. I know when I'm away from home, I miss my dog sometimes more than anything else. I mean, she sleeps with me every night! But even though I don't get to bring McKenzy with me to college, I still get a boxer to play with! She's still a puppy so it's tons of fun. She's in that awkward "teenage" stage where she's not used to her legs yet and thinks she's smaller than she really is. I love playing with her, even when I have to pry my fingers from her mouth from time-to-time. She's precious and I'm overjoyed that she'll be here for at least a year with me!

I just got out of my physics class. I can already tell that it will be the class I will have to really study for. It's not exactly a thrilling subject and it's at 8am and my focus is on the nap I'd really like to be taking! I know I know, bad student, but oh well. I'm even doing a good job of going to bed at a decent time (10:30ish) to get enough sleep to get up at 6:30.

This morning however I woke up at 5:10 coughing up blood. Can I just tell you how annoying and slightly scary that still is to me? Even though I understand it now, it still freaks me out. So I got up and took another Vit. K (I took one the night before because I felt that bloody cough coming on) and did my morning albuterol. It stopped mostly. I ended up just sleeping until 7 that morning hoping to give my body a little more rest. I think it worked. I'm not feeling fantastic and I'm a little wary because my lungs feel so fragile right now, but I'm still getting everything done that needs to be done. I'm going!

I have 152.4 hours on this Vest. To quote CFFatboy today, "Unbelievable to think of all that time we have to spend doing things others can't comprehend." Preach it! Dear "normal" people, can you imagine yourself in an inflatable vest being shaken for 20, 30, 60 minutes at a time every day? Being tethered to one spot for a lengthy amount of time? You can't write while doing the Vest, so homework is out. You kinda need headphones to hear anything while doing the Vest (plus the air compressor for treatments) but ear buds tickle while you're shaken. Don't eat or drink (that's really funny to try though). Don't forget, this is EVERY DAY! Crazy, huh? My friends have told my for years "I couldn't do what you do." Yes, if you had to and you knew nothing different, you could. But I see what they mean. They can't even comprehend having to be so constantly aware of their health status and planning a day with chunks of time set aside for treatments because it's not second nature to them like it is to me and my fellow CFers. Just a thought.

In case you live under a rock, the final Harry Potter movie comes out this Friday. Excited doesn't even begin to describe me. I literally get goosebumps every time I see a preview for it. I don't do midnight showings, or really crowded movies at all, but I'll go see this one early in the runnings. I'm stoked.

I'm also excited about that Dallas trip this weekend too with mama dearest. It really will be fun!

Oh I did some reading during my time of nothingness. I had mentioned reading the 7th Harry Potter book again, but I also read a few other books, such as To Kill a Mockingbird. I love that book. I went to B&N and bought Schindler's List. It's a hard read, but so far good. I'm having to put it on hold though with the fast pace of my summer classes. I'll have some time between summer classes and fall classes, so maybe I'll read some more then.

I guess I'm now just getting out all of my thoughts I had kept bottled up during the time I was "uninspired" to write. Enjoy!

-A

sigh..... Apologies and Excuses

2011-07-11T18:05:00.004-05:00

So I've been very MIA and I apologize. I've not felt inspired to write. I've been a little down and feeling kind of couped up in my house. It's not that I don't enjoy my family time or I don't like being home, but when you've lived away for an extended amount of time, it's hard going back. I've also had trouble with the idea of summer where you do "nothing." As a CFer, I feel as though doing "nothing" for an extended amount of time is a waste of my precious time. Being bluntly realistic, and maybe even too fatalistic, but I don't have as much time to kill as my peers. They all have probably a good 20 years on me in the long run, at best, and I find that wasting a few months of "down time" is excessive and extremely frustrating. I cleaned the house one time. Not just dusted here and there. I SCRUBBED floors and made the house shine. I felt like I was actually doing something of value. My summer would have not been so frustrating had I not just been in summer limbo between Spring Quarter and the classes I was going to take in July (which started today). It wasn't enough time to get a job and it was time to repack for my new apartment just as finished unpacking. I, honestly, had fallen into a rut of mild depression. I would cry sometimes because I was so miserable doing nothing.

I had a doctor's appointment this past Tuesday, July 5. It didn't go well. During my rut of sadness and frustration, I neglected most things health-related. Well done, brainiac! So now, not only am I recovering from being upset, I'm not feeling well either. A downward spiral for sure. My doctor looked at my numbers and just flat out asked me... "what happened?" Then the tears began to flow. I just told her everything, about how lonely I was, how my break-up last March has taken a toll on me, how I hated being so bored, how I neglected my meds to be in control of something in my life, etc. etc. etc. With her understanding that these results were self-inflicted and not just me being sick for no reason, I was granted oral antibiotics for 3 weeks instead of IV ones. However, I go back in mid August for a re-test of PFTs. I'm about 85% back on track on everything as of right now. I'm trying, I really am. Habits are hard to break, especially bad ones. I'm also on a pill to make me hungry because my appetite has dropped significantly and I've lost 2lbs over the last few months. Bad bad bad.

I'm getting better though. I'm back in my college town with new and old friends and finally school! As much as I hate my 8am physics class, I feel like I have something worthwhile to do. I have a purpose again and something to keep my mind occupied. TV gets old really fast.

Also exciting, I'm going on a mother-daughter Dallas trip this weekend, Friday-Sunday including Six Flags and shopping! I finally feel like my mom has become more of a friend figure who I can talk to instead of an authority figure and I like that. We get along these days. I like finally being respected.

Sorry for not posting forever. I really would pull up a new post and just stare at the screen, feeling completely unmotivated to type. Even when I had things to say, the words wouldn't come so I just closed the screen.

Things are looking up. After having a very rough spring, and a frustrating summer, I feel there is only good ahead. I have hope, and that's a good thing.

-A

Summer, goals

2011-06-12T12:58:00.004-05:00

Well hi! MIA as usual, my apologies.

I'm just enjoying my summer days before I head back to school in July. I'm almost completely unpacked (ha! Said it would take until half of June) but I've been doing other things too. I finished my scholarship application, turned it in, visited friends I haven't seen in what seems like forever, spent quality time with family, reread the 7th Harry Potter book (since the movie comes out July 15), and shopping for my new apartment. So while I've been busy, it feels like I haven't done much at all!

---------------
Goals. I have been told all my life to set goals for myself. I have avoided admitting to making goals for the fear of not reaching them. However now, I see goals in my future that I'm striving for whether I reach them or not.
I reached one goal after my freshman year of college: stay out of the hospital for my first year! I managed to stretch my accomplishment over my second year of college too. My new goal is that I can stay out of the hospital all my college life, including grad school. It's going to take a lot of work, a lot of perseverance, and a lot of doing stuff I really don't want to do. But this is my goal and it benefits many people, not just myself. Do you have any idea how hard it is to fight for people who aren't even a thought yet? My future family is far from being created, but I'm fighting every day to spend time with them. An RT once told me that when I do treatment, I'm not fighting for today, I'm fighting for tomorrow. I'm fighting for my kids' first days of school, for their soccer games, for their graduations and weddings and their kids too. I'm fighting to have those moments with THEM, not to have more time for myself. See the difference?
From this side of the screen, it seems like people who already have their families have an easier time fighting because they have eyes to look into and think to themselves "I'm doing this for you." I've been trying to do that with my niece and nephew. I want to be around to be their aunt for many years to come. I want them to see me live a wonderful life of many years with them. I don't want them to grow up and remember me as the aunt they don't remember so well because I passed away too young from some terrible disease and they didn't know me very well. That would be my life's regret. The same goes for my kids one day. I NEVER want them to say that they don't remember their mom because I passed away before they really knew me. That's why I'm fighting. That's why pictures of my niece and nephew are so dear to me. Those are the eyes I look into right now and say "I'm fighting for you."

-Annie

Summer. Finally.

2011-05-19T22:45:00.004-05:00

The quarter from hell is over. I literally have had the worst quarter so far. It could have been worse, yes, but man this quarter was rough. However, despite all that happened, I still ended with a good GPA!

Enough about the past quarter, it's time to move on. It's time for... SUMMER!!! So far, my summer has been pretty chill, which is how I like it. There has been a lot of Harry Potter Weekend watching. My latest project is going through all the stuff I brought home and trying to weave it back into all the stuff I had left at home and make it all fit. I did clothes first and I have a VERY large stack of clothing/shoes that is going to Goodwill. This is quite a project, but I've got several days to get it done. I also have a scholarship application due soon that I need to get a move on doing. And then come July, I move back to Ruston! So little time! The last thing I want to happen is by the end of June, I finally have my stuff unpacked and situated for living at home, and then I have to turn around and pack it all up again for my new apartment! That would happen to me, lol.

I ordered some CF Silly Bandz recently and they arrived!! I'm so excited! Hear me out, I've *never* had the desire to wear Silly Bandz before in my life. Never. Just never felt the urge to buy a pack to wear or see what the shapes are. But then one day I found the CF Silly Bandz and that was the day I decided I wanted to wear Silly Bandz, but only these. Check them out:
CF Silly Bandz

They compliment my CF Awareness Band from Fatboy quite nicely. My right arm is all "Cure CF"ed out.

Me? I'm doing well. Excited about the future and what it may hold. It's a good day.

-Annie

Benefit of having CF

2011-05-15T14:26:00.002-05:00

So of course the most obvious main benefit of the common CF patient is the ability to eat whatever and not be the size of a house. My body and I decided to take full benefit of that "gift" from CF and I eat WHATEVER I want at any hour, and fight to put on the pounds. However, that "gift" sits at the top of my list tied with another: my abs.

I have mentioned this before, but it becomes ever more obvious during swimsuit season and since I've been coughing more lately. My abs and my back are ripped and I love it. If I'm wearing just a sports bra and some sweat pants, I look like I should be in a work-out video as the trainer. Y'all, I'm PROUD of my body. Ask 100 other 20 year old girls that and see if you can ever get that answer again. Having CF has definitely gifted me with a strong and healthy-looking core body that I'm proud of.

Also, school ends WEDNESDAY then I'm home for until the start of July. Then back to school.

See you on the other side of finals!
-Andrea

The Vest: Friend or Foe?

2011-05-04T20:37:00.002-05:00

There are days when I finish the Vest and I want to give it a hug or a high five (if it had hands, of course). There are other days where the "minutes left" section seems to almost go backwards. Today is one of those days. I've had to stop it multiple times because my coughing is so extreme, I'm about to bring up the fantastic dinner I had. That, my friends, is a MISERABLE feeling. And I ate 2 hours ago. This was not a "somebody didn't wait 30 minutes after eating before swimming!" situation. This is just a "my Vest hates me" kinda day. Happens. Doesn't mean I shouldn't still use it. It just means today, I won't be smiling afterwards because I feel better, but more likely because I'm done! (2 more minutes.... almost there....)

Two weeks from today, so on May 18, I will be DONE with my sophomore year of college. :) But with every silver lining, there is a dark side: some of my best friends are graduating and moving away. :( Luckily, Skype exists so we can still help each other with what to wear when going out!!

(DONE WITH THE VEST FOR TONIGHT!!!!!)

So with summer so close, it just means finals are even closer. Oh boy. I can't wait. lol

Hope all is well with you. Have a fantastic day!
-Annie

Wordless Wednesday

2011-04-27T10:18:00.002-05:00

Health update + family time

2011-04-23T15:06:00.003-05:00

My doctor's appointment was on Tuesday and my sinus infection was dying down, but I was still concerned. However, my numbers were, even to the hundreth (0.01) decimal place, the EXACT same as in January!!! That's huge! I'm thrilled. My doctor and I looked over my PFTs for the last 4 years, and I have been between 60%-80% and overall very consistent. She is thrilled with my overall health over the last several years (really, my whole life) and how even with so many changes (ending soccer, going to college away from home, growing up, etc.) I've stayed healthy and consistent! I've got CF on lockdown, yall.
I did lose a pound, but we contributed it to my antibiotic which has seriously curbed my appetite lately. They're not worried about it.

I went home for Easter break and have enjoyed all of my family time! I've hung out with Carter and the newest edition to our family, my cousin baby Louis! We've dyed eggs, Carter had an Easter egg hunt, and played a fun game knowns as "Laugh Your Face Off." (Anjea, it has to do with words/drawings similar to pictionary and you have be banned from playing it with us!! lol just kidding)

Only 4 more weeks of school, then SUMMER! I cannot wait. I don't think I'm ready to move home, I like living away actually (oops, mom don't read that!), but I'm definitely ready for a break. I'm taking summer school in July and moving into my new off-campus apartment on July 1st. I think a month at home will be nice. I'm doing a little bit of travelling during June too, (New Orleans, California, etc.) so it won't be just a month of being home, bored.

Oh, more family time! Just got invited to play some cards, one of my favourite family activities. Probably a wild game of "I Hate This Game" is about to break out. Always fun! :)

Have a nice Easter everyone!
-Annie

Sick-- first time in forever

2011-04-12T19:37:00.002-05:00

I was so excited because I made it through all of winter without getting sick! I knew it had to return sooner or later.

I started a 2 week round of oral antibiotics with a refill if I'm still not feeling better. I'm also already scheduled to go to clinic in 1 week, so pretty good timing there, Mr. Sinus Infection!

However, it has left me pretty drained, making my 8am classes 4-days a week kinda difficult. I'm doing the best I can!

Life has been full lately which is why the blog has, yet again, been put on the back-burner. Sorry 'bout that.

And I hate to call it a day this early, but I've got some studying to do. Just keeping the world updated on my life!

More updates after clinic at least!
-Annie

24 days and a funny video!

2011-03-26T13:10:00.002-06:00

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

Running against my will!

2011-03-16T08:38:00.002-06:00

I decided to be a good cyster and take a workout class to make sure I get some fitness in, despite my lack of will-power. I joined the Aerobic Dance & Conditioning class at 8 every Tues/Thurs morning. So far, it has showed me just how out of shape I have gotten since high school!! The first real day of class, last Thursday, we did circuit training with push-ups, crunches, running, and a few other things. It hurt, but it felt great! Tuesday, we ran a 1.5 mile run. We will do it again at the end of the quarter to see how we improved. I ran it in 15:35, so roughly a 10 min. mile. Works for me!! I thought that it was pretty good for being out of shape, so I can't wait to see what I can do in 10 more weeks.

-Andrea

2 Years!

2011-03-13T10:34:00.002-06:00

Dear friends,

It has been right about 2 years since I've been in the hospital. My last IVs (at this time) were for my sinus surgery/post-surgery pneumonia if you want to even count that as IV treatment. If not, then the last time for IVs was in NOVEMBER of 2008. WOW!!!

I just wanted to post that because it dawned on me today that the end of March was that milestone. How exciting!

Thought I would share in my excitement!

-Andrea

Body talk

2011-03-11T10:44:00.002-06:00

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

Fear can sometimes be encouragement

2011-02-24T21:50:00.001-06:00

The title of this post says it all. I have a twitter follower request from a 24 year old woman waiting on her new lungs. Cystic Gal got her lungs right around age 30. The boy JM I've mentioned before got his lungs in December. Even Grey's Anatomy today was about a CF patient getting his new lungs! I read Facebook posts, blog posts, tweets, and news articles about people getting new lungs. I even cut open a sheep's lung the other day in my Anatomy & Physiology II lab. Lungs lung lungs. I like mine. I'd like to keep mine. I hope to never have to give them up.

My good results from Cayston at the last check up gave me hope. If I stick with Cayston, Albuterol, Pulmozyme, and the Vest, plus my cardio I'm adding next quarter...well, let's keep these air bags healthy!! Sound like a plan?

At my last appointment, I spoke with JM's mom. She spoke about his year prior to his transplant. It was a very tough year for him, brought on mostly by his own personal life choices that had finally all caught up with him. She asked me a question that never in my wildest dreams would someone ask me at this point in my life: "Have you ever had to be on a ventilator?" The look of shock on my face was clear. Of course not. I'm 20, healthy, and living my life. Why on earth would I be vented? Well JM had and his mom described it as one of the most terrifying things.

Hello, motivation.

While my doctor's have never even whispered the word "transplant" to me, and my PFTs are too high to even think about it, it sure has been on the front of my mind a lot. I'm actually kinda bullied into being on top of my treatments by the overwhelming amount of transplant talk. Is that a good thing? Maybe. The result of the lingering topic is good, but being scared into good health isn't. I'm hoping that I can alter my own attitude from being afraid to being proactive. Either way, I plan on keeping these lungs forever by taking care of them and staying in shape.

I once told my friend, crying, that if I was ever excited about being on a TX list that she needed to snap me back into reality. While it may be an exciting time for many people, and congrats to them, it is some place I hope to never be.

I apologize if some of you find my last statement offensive. It is not meant to degrade anyone, but simply voice my personal feelings about the situation in regards to myself.

On a lighter note, I'm done with Winter Quarter! I get a short break, then back for 2 days, then off for MARDI GRAS! Sophomore year is flying by. WEIRD.

Sorry for being MIA lately. I really had to buckle down and focus all free time on school. You even missed a leg injury that I really thought was a fractured bone!! 2 weeks later (today), it still hurts to the touch and sometimes even to walk. So maybe I did do something to it. Regardless, I'm a quick healer and was walking normally by the next day.

That's all for now. Hope to be back posting more often now that I'm done with finals!

-Annie

Interview with Fatboy and Beautiful!

2011-02-07T17:51:00.004-06:00

Many thanks to CF Fatboy and his wife Beautiful for taking time out of their busy schedule to answer a few questions!

Fatboy's interview!

1. Tell the blogging community a little about yourself, Fatboy.
We live in Tampa and I graduated high school with a full-ride scholarship to USF (Go Bulls!), which I promptly lost and had to get a job. 13 years later, I finally graduated and got on with my life with that monkey off my back. I proposed to Beautiful the month after she graduated from USF (we dated her whole time at college) and were married that fall. That was 4 years ago! We now have a townhome, 2 cars, 0 kids, and 0 pets - almost average by all accounts.

2. When were you diagnosed and how did your family react?
I was full of crap coming out the chute, so they knew I had issues. I suppose they were freaking out about how to pay for all the surgeries I needed and relieved to know what was wrong with my older sister. She lost her fight a couple years later, so all of their energy was spent keeping me going, and here I am - 32 years old living life better than they could have dreamed 28 years ago.

3. What are your gene mutations?
ΔF508/ΔF508

4. Tell us a little about your medical history; surgeries, hospitalizations, and anything else other than CF that plagues you!
Meconium ileus, jejunal atresia, 10 sinus surgeries, and countless blockages. I have a knack for getting in-grown hairs that require a trip to the family doctor for some scalpel work. Other than that, CF is pretty much the root cause of all of my health issues, though I may be facing diabetes (even from otherwise healthy family members) and rheumatoid arthritis in the next 10-20 years.

5. What has been your greatest motivation throughout the years to stay healthy?
Times past, nothing. Now, I have Beautiful. I'm not allowed to die before her.

6. What has been your greatest challenge?
Finding balance between relationships, work, health, and "me time." I am a workaholic who is a recovering lazy butt by nature (though never really by actions - strange, I know) who is finally living the dream of owning my own company, working from home, and finally trying life with one income for some added sanity. This constant drive to work has a negative impact on my health because stress directly affects my weight and ability to fight off infections while wife and "me" time are left fighting it out for the available time when I'm not working.

7. Who is your greatest inspiration and why?
I'd have a hard time deciding between Beautiful for putting up with me and Joseph in the bible for all the crap he went through being sold into slavery and how he persevered to become the second most powerful man in the land. I sometimes think I have his determination, and that helps keep me going sometimes. It's a great account of a great man, for those who haven't read the whole thing.

8. What is your greatest fear about having CF?
Leaving Beautiful with a mortgage and a bunch of business deals that she would have to make contact with to tie up lose ends and some freak thing where my life insurance gets denied on a technicality, leaving her only with what we have saved. I do NOT want to leave that as legacy!

9. What are you most grateful about for having CF, if anything?
It keeps me humble. It's my thorn in my side. That's all I have to be thankful for having it, even though some nice things have come from the people I meet and things I do, but I'd never wish it upon my worst enemy.

10. What are your goals for your CF health and your life in general?
I will be here for the cure and the eventual progress with transplants to get new lungs after they perfect the whole rejection thing and will outlive everyone in my generation and above me, looking like a pro athlete all the while; the more like a linebacker, the better.

11. So why did you enter the blogging world and what did you hope to accomplish with it?
Unrelated to CF, I started blogging in 2005 and made quite an alias name for myself back then. One thing led to another to another to another, and when I was finally ready to turn my CF health around, blogging about it was the natural thing to do. I aim to change the standard of thinking about CF and what people can do with it and how they can beat its natural progression.

Now that all of those tips and steps are there, I am moving more into motivational topics. It's so easy to default to letting life get you down, even for healthy people, so anything I do to put some positive things into daily living to stand out from the din of depression that is the majority of life's input into our minds will hopefully help others, too.

12. Continuing with the previous questions, what HAVE you accomplished with your blog?
I've heard from quite a few people that I've done just that already, so I aim to keep on keeping on. So far, moms have changed their thinking from despair and grief to hope while guys just like me have ditched the idea that CF has complete control over when we go on IVs, making gaining weight a key component to healthier life.

13. Why did you decide to sell the CF Awareness Bracelets and how would someone go about ordering one?
I decided to sell them after we attended our Great Strides walk and they gave us yellow bands for the leaders (Hello, Lance Armstrong) and blue ones for the other walkers. What the heck? CF's color is purple. I looked around and couldn't find any purple CF awareness bands online. I'm out of stock right now, but we just ordered more this week, so when they arrive in the next couple of weeks, they can be snatched up at http://www.cffatboy.com. Coming soon, we will have some more options for CF awareness, but we are going to work out those details when I have finished some more projects.

14. So I read on your blog the other day that your wife is now working with you. How’s that going?
We are 2 days in and so far so good. We just celebrated our second company anniversary on Groundhog Day!

And let's hear from Beautiful!

1.Tell us about yourself, Beautiful!
I'm 26 years old. I'm a University of South Florida graduate. I majored in Business Administration with a minor in Marketing. I married the best husband ever, 4 1/2 years ago. I enjoy shopping, scrapbooking, reading, and blogging.

2.When did you and Fatboy start dating? How did you meet?
We started dating right after I graduated from high school. Our families went to the same church, so we met doing youth group activities together. We dated all through my time in college, and got engaged as soon as I finished my degree.

3.When did he tell you he had CF and how? How did you react? How were you able to accept it?

I kinda always knew something was "wrong" with him, but I didn't know what it was. It was pretty sad and scary to think that he was never going to get better. I just had to decide that I would rather spend as much of my life with him for as long as he had, then to leave him now because of the fear that he might get sick sometime.

4.What roles do you play in Fatboy’s health?

I try to encourage and remind him to do all of his treatments everyday. I keep track of all of his prescriptions and fill his pill container with his daily vitamins. I also try to plan meals that I know I can add a little extra calories/fat to his portion, like topping his half with extra sauce or cheese.

5.You have a blog of your own! Why did you decide to start blogging and what did you hope to accomplish with it?

Jesse had been trying to talk me into my own blog for a long time. I honestly didn't think that anybody would read it. Then I realized how much time I spent enjoying other people's blogs and thought I would finally give it a try. I really enjoy it because it gives me a chance to process things that happen in our lives and share them when I'm ready. The best thing about blogging has been all of the CF friends I have been able to meet. It is so great to get to know other people that are going through the same things that you are.

6.Are you excited about working with your husband from home?!

I am so excited about starting to work at home. We have been wishing we would be able to do this for a long time. I can't wait to see what great things we are able to accomplish this year by putting all of our energy in one direction!

Thanks again! Please pay them a visit at www.cffatboy.com and www.kristinology.com!

-Andrea

My Anatomy & Physiology II lab experience

2011-01-26T15:24:00.005-06:00

Hey!

Sorry I haven't been posting too much lately. There really hasn't been much going on in my life, CF or otherwise. The lack of things to report in the CF world is a GOOD THING! I haven't been feeling 100%, but I can overlook that most of the time, especially with my good reports from the doctor!

Oh! I can tell you what happened yesterday in class! On Tuesdays, this quarter, all I have is my 8am Anatomy and Physiology lab II. We do things like dissect fetal pigs, look at cool slides on a microscope, and prick our fingers to test our own blood! I was really nervous about this, despite the numerous times I've had my finger pricked for CBCs. This would be the first time I've ever had to do it to myself. We were given the option of leaving the class if we thought we might pass out at the sight of blood or needles. While it crossed my mind to leave, I had one goal on my mind: learn my blood type. So I opted to stay and somehow get up the nerve to prick my own finger.

They provided us one of those spring-loaded needles that nurses use, which helped tremendously, but I still spent waaaay too long wiping my finger with an alcohol wipe and "milking" it prior to sticking it. It finally took my lab partner to say we were doing this together on the count of three, ready or not! "ONE.... TWO... are you ready...." "NO!!!" "Ok... THREE!!" *prick*

OWWWW. Please, pancreas, never give up completely. I really don't believe I can handle checking my blood sugar regularly. Despite the tiny prick, it HURT!

At first, nothing came out. I begged my finger to start bleeding so I wouldn't have to do this again. Then suddenly, it just started to gush out. I placed the drops on the test paper, more drops in a capillary tube, and a smear on a white paper. Done. Now I had a new problem: I can't get my finger to stop bleeding! The only thing I had to nearby to use to put pressure on it was an alcohol wipe and it hurt! After it was all said and done, I learned that I'm not anemic, I'm O+, and my hematocrit level is normal for an adult woman. Sweet! Except my finger has just now stopped hurting. It was bruised! I'm not fit to be a nurse. lol

Coming soon, the interview with Fatboy and his wife Beautiful!

-Andrea

Something to look forward to...

2011-01-22T20:37:00.003-06:00

Coming soon....

An interview with Fatboy and Beautiful!!!!

.......get excited.....

I plan to start interviewing a person every other month who has been influential in a positive way in my CF journey. So CF Fatboy starts us off next month!

-Andrea

Doctor's Appointment update!

2011-01-18T22:59:00.003-06:00

Today was my first doctor's appointment of 2011. I am always paranoid that my appointment won't be good, especially when I don't even feel well. I kept my mouth shut this time even though I had accepted a bad report. Here are the stats:

Weight- 114.75 lbs... down from ~116.
FEV1- 72%! Up from 63%
Total capacity- 73%!! Up from 64%

WHAAATT?!! Both lung numbers are up 9%!! Dear friends, I have been preaching the miracle of Cayston without results, but now I have solid results: Cayston WORKS. Are you listening?!! It took me a few doses to get results, but I have results!!! 9%!! I've never had a jump like that before. I was blown away. Absolutely blown away.

Three words: God bless Cayston.

I also saw today JM who recently got his new lungs. He looks good and his mom said that he is doing so much better. That's such great news.

:]

-Andrea

Baby Picture time!

2011-01-15T23:18:00.003-06:00

As I was looking through baby pictures of myself recently, I found this really sweet picture of me sitting in my mom's lap doing treatment as a baby. I don't think I was even a year in this picture. I was going to post the whole picture, but my mom didn't like her hair in it. Since I didn't ask for her permission to post the picture of her, I simply cropped her out. While this makes me sad, I would rather be sad by cropping than have her unhappy with me for posting it!! But here you go! Me doing treatment waaaaaaay back in the day!

-Annie

Annual Blood Draws- my secret weapon

2011-01-13T15:07:00.003-06:00

Traditionally, lab work consists of multiple sticks, a few tears, and more than one incompetent phlebotomist (or a trainee). It's a miserable doctor's trip that I dread every winter. But this year was different....

Today was my annual lab work and x-rays. As usual, I've been nervous all day! But, this time I had a secret weapon... my RN. Last time I visited the doctor, I commented on how nervous I was about having my lab work done before the next visit. My RN casually mentioned how good she was at drawing blood and how she would be glad to do it for me.

I have no idea if she was serious, but I took it to heart.

So I called her yesterday asking if she was still up for doing my lab work and if she would be available as soon as the following day. Within an hour, she had gotten everything scheduled for me!

So today, I drove to the Children's Sub-Specialty clinic and meet my RN there. She signed me in, takes me back to a room, and prepares the 7 vials, 2 with foil and one with ice. Before she left to meet me, my other RN warned her how difficult (me and) my veins can be. Luckily, she was up for the challenge.

She prepares my arm as all past nurses have: alcohol wipes to clean it off, rubber tourniquet, and slaps the crook of my arm a few times. She finds a vein (amazingly!!), opens the needle, and slides it in. It was as painless as it could be. She pulls 7 vials of blood in record time, removes the needle, and presses the gauze down. Done.

It was record time and record painlessness. I have NEVER had lab work done so well before. Rarely in one stick and never without difficulty. Until today. I asked my RN if she could possibly do it for me every year! She has a gift.

Finding someone who can pull blood from me without difficult and with little pain is finding a needle in a haystack... and I found her. :]

X-Rays were easy of course as was the sputum culture. Actually, it was all easy today. So unusual! Official doctor's appointment on Tuesday at 9am. As usual, a full report after that.

-Andrea

Parents, tattoos, and surgeries

2011-01-08T10:17:00.005-06:00

Today is Parent's Weekend for Sigma Kappa!! My rents are here, but I thought I'd put in a quick post since I've been really MIA lately. It's been a fun day filled with brunch with Mom, bowling with Dad, and then our banquet this evening!

So... I've been putting this off, but I wanted you dear bloggers to read that I got a tattoo! Check it out:

(That's the inside of my left ankle/heel area)
I've been putting it off because I wanted my parents to see it in person before I put it up here. I was getting it done Monday, but the tattoo parlor was closed. I was getting it done Tuesday, but they had no openings. So finally, I made an appointment for Thursday and got it done. It kinda hurt, but worth it. Joey, the tattoo artist, called me a wuss. Haha.

Beeker had her surgery and is recovering now. She has to stay in one of those cones and I hate that, but it's necessary. Poor baby. :[

Fatboy also had his surgery, but he's not in a cone! He went home really soon post-op and starting eating right away!! Trooper. Read about it here.

10 Days until my doctor's appointment. And sometime before then I need to have lab work and xrays done. Hmm. When am I going to find time for that?

Time to go have fun with my sisters and my parents!
-Annie

Hello, 2011!

2011-01-07T06:25:00.002-06:00

My first week back in school since the New Year has been pretty good. Busy, big surprise, but good! This weekend is going to be busy too with it being Sigma Kappa Parent's Weekend and our banquet.

Sorry for the short update. I'm sleepy still, I've got class soon, and I've got a lot on my plate including a test on Monday.

Here's a shoutout to CF Fatboy who had another sinus surgery yesterday. No update from him yet, but his wife said that they were home already, which was earlier than Fatboy expected! That's fantastic news.

Sorry for the short update. My next one should be longer.

-Andrea

Prayers for my brother's dog Beeker who is having her right eye removed today due to a tumor. Praying that the surgery goes well and the tumor is benign.

Merry Christmas!

2010-12-25T08:16:00.003-06:00

Merry Christmas everyone!! :]

It's Christmas morning! I'm so excited. Yes, I'm 20 and still love Christmas morning. I'll always be a kid at heart.

I had another post ready but it just crushed the Christmas mood so it will have to wait until later.

I hope everyone has a very, Merry Christmas with your friends and families!

-Annie

A Christmas gift to myself

2010-12-25T00:26:00.006-06:00

Merry Christmas again everyone!! :]

I hope your Christmas was just as fantastic as mine was, filled with the story of Christ, quality time with family and of course, great food.

On a less happy note...
Warning, brutal honesty up ahead. To keep your Christmas cheer intact, read later!
So, I'm frustrated with myself. I fluctuate on being compliant and not. Current status: bad Annie. But my Christmas present to myself is compliance.

It's a gift to myself because if I'm compliant now, I'll still have time for things later in life when I'll really want to still be around. And also for the now. Right now, I sound terrible, coughing too often for my personal comfort. I can barely play soccer. I can hardly sing. I can't lie down without people asking if I'm ok because I'm coughing so much. NOT OK WITH ME. Yet, I did this to myself. So, with roughly 20 days until my next doctor's appointment, I'm challenging myself to be 100% compliant. Not only in meds but also in fitness. I may not run 2 miles every day (although I am still really proud of myself from that day in Dallas), I need to run some and walk some. Mom also got Zumba for the Wii for Christmas and I tried it out with her today. It's really hard, but has great potential to be a serious workout. In an extension of my compliance, I've also upped my Vest time. Instead of 15 minutes once a day (which is surprisingly low), I'm doing 30 minutes at night and 15 minutes in the morning. This is not a suggestion, but an executive decision on my part to change my routine. It's set in stone as far as my compliance goes.

This morning was rough with the pills. Breakfast took a little longer than I anticipated to be ready, so I felt very sick for a few minutes with a handful of pills on an empty stomach. With a few crackers, it was remedied.

I can't decide whether this is going to be difficult or not. So far, it's not really been that hard, but it's been a mind of matter situation. It's so much easier to pop a select few pills and walk away than it is to wait and take them all, but I am getting my mind over the urge to just walk away. So far, so good. I've been 100% compliant so far and I fully intend to keep it that way. I've thought about getting someone to keep me accountable, but knowing myself pretty well (ha!), I know that the person gently reminding me or asking if I've taken everything, every day, would drive me up a wall and I would probably give up and be angry/frustrated about it. So it's just me holding myself accountable to myself and to this blog and to my own personal records.

I can do this.

My goal is to extend the compliant nature past my doctor's appointment of course, and hoping that by that time, things will simply be habit once again and I won't have to do a daily battle with myself!

Finishing up my 30 minutes of evening Vest, about do to my evening Cayston, then making myself a water, taking my evening pills, and then I'm off to bed. I've had a very, Merry Christmas and I hope you have too!

-Annie

Long time no see!

2010-12-22T00:02:00.007-06:00

Hey blog readers,

I apologize for my MIA tendencies lately. However, when a lot of things come up at once, my blogging hobby gets put on hold.

So two weekends ago, I went to Dallas with almost 30 of my sorority sisters, just because! It was a blast. Instead of getting a hotel, 5 of us stayed at a mom's apartment and that was no doubt even more fun than a hotel would have been. Here's a picture to share!

The 5 of us piled in a Honda Fit and hit the road. Between the Tahoe, ice skating, shopping, that crazy mechanical dog that laughs, and my sisters, it was one of the best weekends ever.

And, be proud. I didn't bring my Vest, but Saturday morning me and two of my friends ran 2 miles. Yeah, you read that right. 2 MILES. I walked a little bit (a few seconds) of mile #1 but mile #2 was killer. Especially the uphill section at the end that I was unaware of until we got there!! Haha. I was really proud of myself though, and really appreciated my friends who ran it with me. I couldn't have done it without them.

So it's Christmas break! Yay! I'm home again and with my family. The brother/sisinlaw/niece from Austin are here for several days. It's been really great to see them and my precious niece! Yeah, it's picture time again.

Isn't she adorable?! *sigh* she has my heart.

That's about all that I can think of that's going on right now. The next several days will be spent with family and I'm pretty excited about it. My puppy is so tired though. She's working so hard to entertain the babies and avoid the big dogs while chasing the little dog. She's looked like this most of the time:

Oh, and with this little guy, we've hit a whole new level of fun: he's a pro at walking now. He's walking good, standing up by himself, chatty, and happy. He has my heart too, that precious little boy.

Oh, one more thing, I got an executive position in Sigma Kappa and I'm thrilled about it! I've been preparing to go back to school so I can perform my duties well. I just wanted to add that to the blog since it's about my life in general! :]

Until next time, have a very Merry Christmas, a Happy Hanukkah, and a fantastic winter holiday!!

-Andrea

New post soon!

2010-12-13T22:03:00.002-06:00

As usual, I'm busy with school! But I had a great weekend with my Sigma Kappa sisters and I have a post about it coming very soon! Promise!

But first, I have a lab report due at midnight tonight. Sorry, that takes priority.

-Andrea

I'm Published!

2010-12-08T13:15:00.003-06:00

I had been asked by someone who works at the Sigma Kappa Triangle (my sorority's national magazine) to write an article about having CF and how being a Sigma Kappa has helped! The Autumn edition of the magazine came out today and my article was on page 7!

Somebody to Lean On

Sigma Kappa with chronic illness finds support in sisters

Being a college student can be hard sometimes. Being a college student with a serious illness makes things even more difficult. At birth, I was diagnosed with a disease called cystic fibrosis (CF), a genetic life-shortening disease that makes simple body processes, like breathing or digesting food, more complicated. However, with many advancements made in technology and medicine, the quality and length of life for people with this disease has dramatically improved as I’ve gotten older. Now, just shy of 20, I’m away at college and thriving in all aspects of life.

Life with CF can be frustrating at times. Between the number of pills, the breathing treatments, and chest percussion therapy, a lot of time and thought goes into maintaining my health. Because of the rigorous daily routine, going to college is a challenge for people with CF. We must have excellent time management skills to be able to balance school, health, and personal life. Our personal choices are based around our health instead of what might be popular. And while making friends hasn’t been affected, letting those new friends behind my protective barrier and allowing them to see this vulnerable side of me is hard to do. I went to a college away from some of my closest friends, a decision that left me outside my comfort zone. I was nervous about branching out and meeting new people, afraid of their reaction when they learned of my illness.

At the suggestion of my family, and after some persuading, I decided to go through formal recruitment. Did I think I would actually join a sorority? Not a chance. I did not think of myself as a “sorority girl.” However, once preference day came, I knew my heart was already with Sigma Kappa. After just in the few days of recruitment, I could tell that these girls were new friends I could trust.

With these newfound sisters also came a newfound fear: telling them my biggest secret. I have been closed off my entire life about CF because I never wanted to be labeled. I was an athlete, a singer, a Christian, a friend, a teammate, but never the “sick girl.” I was determined to not let CF label me in college, especially not with my new sisters. The last thing I wanted was for them to look at me and see “cystic fibrosis.”

At the end of my freshman year, I wrote a letter to our executive council asking if we could take on cystic fibrosis as a local philanthropy -- my first step at trusting my sisters with my secret. Our President, Sarah Carroll, said that my sisters would support me in any fundraising I did. At the start of my sophomore year, I knew the Great Strides 5K for cystic fibrosis was coming up soon and I decided it was time to open up and trust my sisters with the thing I’m most afraid of sharing. I stood up in chapter meeting to explain the race and why it was important to me personally. After my announcement, there was only positive support. My sisters in Sigma Kappa stayed true to me, as I knew in my heart they always would. The day of the race, my sisters drove an hour to walk with and support me. Those that couldn’t come donated money to the CF Foundation. My sisters in Sigma Kappa have just started a long journey with me in dealing with my life-long battle with CF, but I know that when things get tough, my sisters will always be there. I couldn’t do it without them.

Video of hope

2010-12-07T11:05:00.000-06:00

This is a great video about Vertex, the new drugs in the CF pipeline. This guy explains how the drugs work on a level that everyone can understand it. Please take a few minutes to watch it and hear the great news about the future for CF drugs!

-Andrea

Back in the swing of things

2010-12-01T21:40:00.003-06:00

Classes started back up today, hello Winter Quarter. You're going to be just as difficult as fall quarter, if not more so. I enjoyed my first day of classes though. My physics professor is Russian, but after about 5 minutes, I adjusted to his accent and understood most of what he said. Walking back into my anatomy class was same ol' same ol'. Same people, same seat, same professor, same classroom, etc. The difference is the attitude my group of friends is taking about this class. We all made the same grade and plan to all make a better grade this quarter!!

I did some decorating in my room today! I hung up 2 collages of pictures, some curtains across my closet opening, and got a little more organized. Having guests in the morning... ;]

I have a cold! No!! It takes me awhile to fall asleep at night due to the coughing, but at least it's very sound sleep. I took a nap today that was supposed to be 30 minutes and turned into 4 hours. Whoops. I needed the sleep though. I just picked up some Dimetapp Nightime cold & congestion hoping that it helps me get to sleep easier and some Advil for my throat. I have also had NO Dr. Pepper in 2 days now. I've been drinking only water and sweat tea (mostly water) hoping it helps my throat/vocal chords. Trying not to talk too much either.

Dear Cayston users, consider joining the ShAIR network! It's easy, it's free, and it helps the CF community! Shoot an email to this address ( info@shairnetwork.com) or call (1-877-742-4770) and they will send you a simple form. Fill it out, fax/mail it back, and they will set up a phone interview. I really enjoyed my phone interview. If you want anymore information on the ShAIR network, email me or email the address I just gave you or call their number! Do it!

Off to wash dishes.. or eat more. Or both. We'll see. :]

Happy December!

-Andrea

Thanksgiving Post

2010-11-26T08:24:00.003-06:00

Dear friends, family, readers, subscribers, and passer-bys,

I hope every one of you had a fantastic Thanksgiving, if you chose to celebrate it. Not all of my viewers are from the United States, but I still hope they had a happy Nov. 25 yesterday. However, those in the US most likely celebrated Thanksgiving, a holiday to celebrate the pilgrims eating with the Indians so long ago. They had so much to be thankful for then. In my opinion, we have even more to be thankful for now.

When Thanksgiving was approaching, I was thinking about what I wanted this post to say. I thought about a list of things I'm thankful for, but the list seemed to never end. I thought about just writing about my day with my family, but that just didn't fit either. Since I've been home, I'm already read 2 books and I'm halfway through my 3rd. I love reading, but I really only have time for it on breaks from school. Each book has taught me something to be thankful for, so that's what I decided to write my post on.

First book I read was "Love, StarGirl" which is the sequel to a book I love, "StarGirl." In short, StarGirl is a very unique girl who just "graduated high school" even though she's home-schooled. Her family moved to Pennsylvania where she connects with them in ways most people can't connect with people. From this book, I learned to be thankful for our strengths, weaknesses, and the beauty of nature.

The second book I re-read was "Number the Stars" which is a short, kids book focused on two families during the German invasion of Denmark during WWII. One family is Jewish and the other is not. The story tells of how the non-Jewish family protects the Jewish family and how they escape to Sweden. From this, I learned to be thankful for good friends, family, and my freedom.

And lastly, the book I am I re-reading right now is "My Sister's Keeper" (which was butchered in the movie; just read the book, it's phenomenal). It's harder to sum up this book, but it's about a family where one daughter has cancer and the other daughter was born to be a perfect transplant match for her. Now, the second daughter, at 13, has filed for medical emancipation from her parents right when her cancer-stricken sister needs her kidneys. From this book, I learned to be thankful for my health.

1. No, I'm not learning to be thankful for my health because I'm reading a book about a girl with cancer. It's not the "oh, she's worse off" mentality. Not at all. I already knew I wanted to post about being thankful for your health, and this book just said it too.

2. What did I mean "be thankful for my health"?!? I have CF! No, I didn't forget. Trust me, I'm doing treatment as I type this. I didn't forget. But I am very thankful for my health. Read on.

My health has it's ups and downs, along with every other person in this world. My ups and downs might just give you whiplash though. I am not only thankful for the good of my health, but the bad. Yes, you read right. I'm thankful for CF.

I think I just committed a CF-sin saying I'm thankful for it. But it's true. Without a shadow of a doubt, I know that I would not be the same person I am now if I didn't have CF. I also wouldn't know so many of the amazing people I know now, my friends through CF. I wouldn't have this blog! More importantly, my health has made me available to help others, through being an inspiration to some and source of strength for others. I don't think I would appreciate the little things in life as much as I do with CF. I don't think I could love people like I do now without CF. I just don't think I would be the person I've become without CF.

So thank you, cystic fibrosis. Thank you for helping me to become the strong, loving person I am today. Thank you, with all sincerity.

I am thankful for so many things beyond those that I listed here, but there's no way I can list them all. But know that you are on my list of things I'm thankful for. :]

-Andrea

Every Life got an award!

2010-11-23T13:56:00.002-06:00

I got an email the other day saying my blog was being recognized as one of the top CF blogs of 2010! How cool! I now have the badge over in the top left corner (as you may have noticed). I'm just really excited about it. Another thing to be thankful for!

My thanksgiving post is coming soon! I'm thoroughly enjoying my break from school though. Tonight, Zumba with Mom!

Thanks for the award Registerednurse.org! Click on the badge to see who else won too!

-Andrea

JM update

2010-11-22T12:47:00.002-06:00

He got the lungs! His mama said all went well and he's out of surgery. Yay!

The Call for JM

2010-11-22T01:34:00.002-06:00

A fellow CFer, who I will refer to as JM, got The Call for his lungs about 7 hours ago. He lives in a city only 30 minutes away from me and the largest group at my local Great Strides walk a month ago was for him. I have no updates other than he got the call. I'll update as I know things.

Thanksgiving post is coming up along with a great video my mom showed me about some upcoming new drugs! We have so much to be thankful for!

Be back soon!

-Annie

Greetings, from the other side of finals week

2010-11-20T00:14:00.005-06:00

The quarter is over and break has begun... THANK GOODNESS. That was a rough quarter, to say the least. But it's over now and it's time to relax for a while, eat lots of good food, spend time with family and friends, and then, once again, start thinking about Winter Quarter.

Health update!

I've still been coughing a good bit (I think it's related to my wacky schedule during finals week) but NO BLOOD!! I can't even tell you how excited this makes me. I still check each time I have a coughing fit, just to be sure, but so far nothing. Yay!

On the other hand, my gut it furious at me. This happens from time-to-time and is where most of my CF problems have occurred. It will pass in due time. Amusingly enough, when my colon makes really funny noises, it freaks my dog out because she doesn't know where the sounds are coming from. Hee hee

Speaking of my puppy, she's been very, VERY clingy lately (I'm talking thunderstorm clingy) and I think it's because she's afraid I'll leave again. The last few times I've been home during college, I've either not stayed the night or only stayed about 24 hours. Not long enough for my dog to be happy with it apparently. She's been enjoyed curling up in my bed with me, I can tell. She's there now waiting on me. Well, she's already napped on my stomach, curled in my knees, and on my feet keeping them warm during the day. Clingy clingy. But I love it. :]

Time to rest up for a Saturday or relaxation. Doing nothing is hard sometimes! Ahh, the joys of break!

-Annie

To celebrate the week of thanksgiving, look for my upcoming post on things I'm thankful for!

3 Finals down + pictures from the weekend

2010-11-15T14:07:00.005-06:00

I just breathed a HUGE sigh of relief after those first 3 finals jam-packed into today. Even though I still have 2 really hard tests left (one Tuesday, one Wednesday), I feel so much better now that those first 3 are behind me!! I felt it was time for a post!

Teaser: some exciting news with Gilead Sciences (makers of Cayston) and some of their partners and me are underway, but no details until later! Just get excited, because I am!!

As of late, I've been devoting almost every free moment to studying for all of these tests. It's been really difficult, but somehow I've managed. My treatment schedule was really off though. For example, I normally do the Vest at night, but I'm doing last night's Vest right now, and will another evening one before I leave to go study. It's crazy, but it's only for a few days. Then HOME HOME HOME AGAIN!! I can't wait, seriously. I just want to pack up and drive home now. If only I didn't have those 2 more tests....

I went home this past weekend for about 24 hours to spend time with my brother/sis-in-law/niece/huskies from Austin, TX, and my in-town family who all gathered for my nephew's 1st birthday party!! Has it really been a year already?! Wow.

Here are a few pictures from the weekend:

Look who showed up! It's me and the boyfriend.
My two brothers with their kids!
Precious, precious niece. I think they look so much alike in this picture.

Such a sweet moment; a mother and her child.
She was so tired!! This picture is just too cute, I had to post it.

And last, but not least, the birthday boy and his mama!!!

Hunger has taken over anything else I can think to type about. Time for food!

-Andrea

MIA-- sorry!

2010-11-10T01:16:00.002-06:00

Long story short:

Next Monday, I have 4 tests. 3 finals and a make up exam.

Next Tuesday, I have 1 final, a lab final, which is harder than the final in the class.

I have been MIA due to studying and this will continue until quarter break (after I finish my last final).

Otherwise, here is a quick announcement for those of you using Cayston, requested by some folks who work with Gilead:

DO NOT THROW AWAY YOUR ALTERA PIECES!!!! Save and reuse.

Also, SAVE YOUR EXTRA SALINE FROM THE CAYSTON DOSE! You never know when you might need them later.

I will make this announcement later too, just to make sure it gets across.

Signing out for another week; thank you college.

-Andrea

Birthday gift from the 'rents

2010-11-03T17:14:00.003-06:00

So my big surprise (that AT&T ruined the surprise part partially) that my parents got me was an iPhone 4!! I love it so much. I am the last person in the family to be able to play Words with Friends on my own device! Before, I would just help Mom.

I'm looking for some apps that people find fun, useful, amusing!
Here's what I've got so far:

Plants vs. Zombies (game)

Angry Birds (game)

Cut the Rope (game)

Words with Friends (game)

The Weather Channel (tool)

Pandora Radio (entertainment)

Ringtone maker (tool)

Twitter (social)

Facebook (social)

Any suggestions??

-Annie

p.s.- THANK YOU MOM AND DAD!!!!! :]

Doctor's Appointment recap!

2010-11-03T02:49:00.003-06:00

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

Birthday weekend

2010-10-31T22:20:00.002-06:00

I had a fantastic birthday weekend! It started off with the Sigma Fall Party (on my actual birthday!) where they sang to me and I got a cake! Then I went home the next day and spent the day with friends and family before having to drive back to college that night. For Sunday was initiation for our new girls! They are official members of Sigma Kappa now! What an exciting time for everyone.

Doc appointment on Tuesday. I shall update again after that.

So far no more blood (yay!!) and we'll see how Tuesday goes.

Until then,

-Annie

Birthday!

2010-10-29T03:20:00.003-05:00

Today is my 20th birthday!! I'm really excited about it! It's a good end to a rough week! I'll be spending it with my sorority at our fall party! I'll celebrate with family/friends from home on Saturday.

I love birthdays!!!

-The 20 y/o Andrea :]

Hemoptysis update #4

2010-10-26T10:56:00.004-05:00

I talked to my doctor again yesterday. Here's the game plan:

I go back to clinic a week from today ( Nov. 1) and get my PFTs checked out. We'll see where to go from there (IVs, etc.).

If I cough up a cup of blood or more in one setting, I drive to the ER back home.

I'm back on the Vest.

So far, no more blood since my last mention of it.

I will update as things come up

-Annie

ps- Birthday Week!

Hemoptysis update #3

2010-10-23T22:24:00.003-05:00

"Glad that's over"

What was I missing? Oh yeah. Knock on wood.

Too late.

I started coughing up blood again this evening. No where near the volumes from before, thankfully, but enough to be concerned about. Calling the doctor Monday morning. Taking myself back off the Vest...

This is frustrating. And scary. I really don't like this. I'm more afraid of what this means and what might have to be done about it than the blood itself. I got over that pretty quickly. But because it's not normal, I know I can't keep doing it. I'm just scared, that's all.

Sorry for the brutal honesty.

-Annie

Hemoptysis update #2

2010-10-23T13:08:00.002-05:00

Alright guys, unknown cystic called me out. I've been MIA about my health updates.

I called my clinic and talked to my doctor. She was glad to hear I put myself back on Vit. K because she would have put me back on it too. She upped my dosage to once a day while I'm on the bactrum (and I still have several days left). I got the ultimatum that if, in 24 hours, I was still coughing up blood, I was to drive home and go see my nurse practitioner (because the rest of my clinic was at the conference!) and get checked out. I was to not exercise or do the Vest, or do anything to stimulate coughing, aside from just my normal day-to-day cough. Otherwise, nothing else was changed.

I prayed hard and waiting for the 24 hours to pass: no blood! I think my lungs got the message that bleeding is not ok and stopped. :] I just started back on the Vest last night, since the hemoptysis had stopped, but I'm being cautious with it. I don't want to start it back up again.

My doctor said it was either just the antibiotics or I actually had a bug of some sort. If I had any bug, I'm guessing the bactrum and Cayston took care of it. But really, I think it was just my lack of Vit. K in my body.

Hooray! Coughing up blood is NOT fun. Glad that's over.

Sorry for the late update, Unknown Cystic. I've been insanely busy with Sigma stuff and finishing catching up on homework from when I missed.

-Annie

Wordless Weekend

2010-10-22T03:01:00.003-05:00

(Stolen, again, from Anjea/Jason's blog. My niece, Kiarda!)

Hemoptysis update

2010-10-18T01:02:00.004-05:00

Yet another day coughing up some blood. This is delightful... *blatant sarcasm*. I did get it up and out though, which is good except for I kinda threw up a little too because it made me gag.

Here's the plan: No Vest while I'm still doing this, Dad's bringing me some Vitamin K (at the suggestion of Fatboy) because I was taken off of it a while back. I'm on Cayston and bactrum already, so any infection will be taken care of, hopefully. I'm also calling my clinic tomorrow to talk to my doctor and to see what the official game plan will be.

In the mean time, I have homework to finish and a few more preparations for Big sis/Lil sis week starting tomorrow! Let the to-do lists begin!

-Annie

Hemoptysis

2010-10-17T00:30:00.002-05:00

So randomly and often spread out, I have had this liquidy, funny tasting, and hacky cough that I never understood. My gag reflex kept anything from coming up and out (as usual) so I never really understood what it was. Until Saturday morning.

My coughing wakes me up at 7:40am this Saturday morning. I'm doing that cough, the one I hate the most, where it feels like I'm drowning and I can't make it stop. I feel like I'm going to throw up all this liquid, not even positive what it is. I cough a ton, open my mouth, put my finger on my tongue and look at it.... blood. And not just a fleck or too. But a lot. I look at my hand more closely and find a lot more blood. My heart starts racing. I get up to do albuterol (not sure what else to do to make this stop!) and get on RunSickboyRun because I remember him saying something about coughing up blood. Sure enough, his description of the amount of blood (tbsp to cups) and the coughing fits. I have been having bouts of hemoptysis for years and never knew it.

I've had two recent bouts, both pretty bad, really close together. I'm hoping that this is just a coincidence, or maybe related to the stomach bug I had, but nothing serious. I remember seeing, while I'm throwing up for several hours, a larger amount of blood in what I was bringing up than ever before. Sometimes when I would cough, I would see a fleck or two, not a big deal. These are not flecks. These spells will fill my mouth of blood. However, for some terrible reason, I can't do anything but swallow it. So I am swallowing a large amount of blood and then I feel terrible for a little while! But if I get it out, I will start throwing up too, and then get REALLY freaked out and still feel terrible. Ugh.

Unless this continues frequently, I'm not making a big deal about it. However, I am scared to use my Vest on days when these happen. Should I?

-Andrea

I haven't forgotten...

2010-10-15T11:44:00.004-05:00

So my lull in blogging is due to getting the stomach bug right after the Great Strides walk, going to the local Urgent Care clinic to get a phenergan shot, and a topical prescription, and then trying to make up important school things (like my English midterm!) on top of Homecoming week this week and preparing for big sis/lil sis week next week!!

The race was a huge success, as I mentioned before in my last post. I really appreciated everyone who came out to support me (including Alissa who drove several hours to get there!) and the amount of money that was raised was incredible. I'm still floored. $29,000. Wow. Just... wow.

Nothing else to really report on right now I guess. I've been given another incredible opportunity to tell more people about CF, but I won't actually tell about it until after the fact. Hee hee. :]

My birthday is coming up! I'll be 20!

Umm... other than that, I can't really think of anything to report. I'm back on Cayston, I'm on bactrum because I had a cold (prevent a second infection), and otherwise feeling much, MUCH, better than I had been over the last week or two.

Ok, I'm starving. Time to EAT!

-Annie

Great Strides walk- part1

2010-10-09T20:24:00.003-05:00

The walk was a successful event!! I'm so happy! It was successful personally because 20+ of my sorority sisters came out to support me, along with some other friends from high school! As an event, we raised.... prepare yourself.... $29,000!!!!! And there were only about 150 people there. But we had raised that much money!

I would love to go into detail about the event, but my nephew is at my knees and pressing buttons on the laptop wanting me to play with him. I can't resist. Here's a picture of the race before I go. More details later!

-Annie

P.S.: this is my 200th post!!

Wordless Wednesday

2010-10-06T18:26:00.000-05:00

Doctor's Appointment recap

2010-10-05T14:57:00.004-05:00

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

My lungs...

2010-10-03T22:32:00.003-05:00

I have never felt pain like this. It's not that it's unbearable, but it's just that it's never happened to me before. I've been absent-mindedly trying to pull my sternum forward with my hands. Literally. I will not think about, but catch myself trying to grab my sternum. I feel like my ribs and my sternum and pressing down on my lungs and it's making it hurt when I cough, swallow, and sometimes breathe. I really don't know what's going on, but since I go to the doctor in a few days, I'm sure they can tell me. This whole thing started this morning. I felt terrible, but I thought maybe it was just the start of a cold. However, I never got a cold. Just this pain in my lungs. NOT COOL.

I'm really becoming more anxious that I'll be sent to The Hole (aka hospital). I can tell I've lost weight because rings don't fit right and my jeans are too loose. And now my cough is getting worse, I got winded walking up one flight of stairs in the cold this evening, and now lung pain. I'm done for. There is no way I'm getting out of this Hole sentence. However, and I say this with emphasis: I DO NOT HAVE TIME RIGHT NOW TO STOP MY LIFE FOR A PICC LINE. I'm on step-show, I have a heart sis and then soon is Big sis/Lil sis week, and Homecoming week is coming up (which is super busy!), and an English midterm, and classes in general that are hard to do outside of the class itself (like anatomy LAB).... and oh yeah, MY 20th BIRTHDAY. I really really can't stop everything right now. The CF Great Strides walk is this weekend and since I'm the one that rallied everyone together I figure I should probably be there to walk it with them. Official verdict will be in 2 days. Pray pray PRAY this is an easy, non-hospitable, fix. Needless to say, I'm freaking out. No tears yet, but they will come. Either when they sentence me to The Hole or when they let me squeak by. I'll cry either way.

I have happier news, and those who are FB friends with me have seen it, but I don't want to dampen that news with my lung pain and fears. So it's another post for another day.

-Annie

My life is always busy....

2010-10-02T10:35:00.002-05:00

....and I wouldn't have it any other way! But that's why I'm slow to update. Current status: my hair is wet from my quick shower and I have step-show practice in 25 minutes.

I slept for 15 hours last night. That's insane. My body literally shut off at 7pm last night. I couldn't keep my eyes open. I crawled into bed and the battle was over. Gracious.

Doctor's appointment this Tuesday. *anxious*

Ummm I can't think what else to type at the moment. Super busy with the new Sigmas but really enjoying my time hanging with them and my other sisters.

Morgan (real life fake sister) and her friend Celeste came and toured the campus and then hung out with me after I got out of class. Morgan cooked for me (again). :] Then I passed out. Maybe she drugged me or something....... just kidding.

Ok, I need to get ready for practice.

Bye!

-Annie

ps. Lots of people from Sigma have signed up to be with me for the Great Strides walk this next weekend. :]

Sigma Kappa sisters are REAL.

2010-09-27T15:56:00.006-05:00

These two pictures are of my pledge class in Sigma Kappa. The first is us being crazy on bid day and the second is from a formal photoshoot we did around town (photo #2 credit to Britney and Brandi Smith, Sigma Kappa alums).

I never thought I would be a part of something so amazing, but yet here I am. This sorority has gone above and beyond my expectations about what a group of women could be. I wouldn't be anything else but a Sigma Kappa for the world.

That being said, I made my little announcement about the Great Strides walk at meeting last night. I was shaking. My heart was pounding. It felt like the room was 130 degrees, even though I was cold just a few minutes prior. I made my announcement (with the help of notes!) and even included WHY this walk was so important to me, even if only so briefly. Nobody scooted away from me like I was contagious. There was no sudden gasp that resounded through the quiet meeting room. No whispers once I was finished talking. Nobody stared at me like I was now something to be feared/studied/avoided. The meeting simply continued, and a friend close to me both physically and at heart leaned in and told me I did a good job. She knew I was terrified. Before the next announcement in the meeting, a comment was made by our Vice President: "support your sisters". The next announcement was from another close friend. It was about supporting me [and the walk] monetarily if they were unable to go with me. These girls went above and beyond what I had expected as a result. I tend to fear the worst, and was more than pleasantly surprised when none of my fears came true. Immediately girls leaned over to me and told me that they would be there for sure. Others came to me after meeting and wanted to know how they could help if they were unable to come. The sisterhood that Sigma talks about is REAL. These girls really and truly care about me, my well-being, and want to support me in everything I do. I thank God for my sisters in Sigma Kappa.

-Andrea

A little of this... a little of that...

2010-09-26T15:39:00.004-05:00

My mind has been going 1000 different ways at once all week. I still don't have much of anything to post about to take up a whole post, so I'll carry on about a few different things. I'll even number them for pure entertainment.

Guys rush is over!! No more late nights cooking food in mass quantities. Thank goodness.
I found out I cook a mean sheep dip. Don't google "sheep dip" because what I cooked is not what you will find. What sheep dip is in my family = meaty cheese dip in everyone else's. No one is completely sure where our term for it came, but it still stands.
I'm tired of people pointing out that I cough. Thanks, but I'm pretty well aware of it. Mind your own business.
Tonight is Sunday Night Soccer again! My legs hurt just thinking about it. It's gonna be fun, but I still won't be able to hang with the guys for very long. I get so winded...
Doctor's appointment quickly approaching... really nervous about that. I know I always say I have a bad feeling about the PFT results, but I do this time too. aaaahhhhhhhh!
I studied way too long for a test I didn't do nearly as good on as I had hoped. *frustrated*
Went back to my college-town church today and was reminded of how much I love it!
Great Strides is Oct. 9. This evening at meeting I'm going to get up the courage to ask my sorority to walk it with me. I'm terrified.

That's all for now.

-Annie

Everything huuurrrttsss

2010-09-19T22:49:00.004-05:00

Central location of pain ATM: my right shin. Playing soccer at night with no lights with college guys and without shin guards, yet not backing down from any tackle because that's not my style results in a skin colliding VERY hard with a knee or foot or whatever that was. Thought I broke it at first, but apparently I just can't break my own bones (knock on wood!) so thankfully it's just a big ol' bruise. But, because it's never fair, you can't see my big ol' bruise! It's hidden, but hurts like crazy!!

Whoa, rewind. Yeah, that's right. I played soccer tonight. It was so much fun. As one of the few girls playing, I have to earn my respect. Working on it.

Seriously? About 2 weeks until my next doctor appointment? Didn't I just go?! Awesome...

I'm so tired. It's time for bed. Gnight.

I feel terrible.

-Annie

Oh, hang on. Graffiti party was epic. 100000x better than last year, and I loved it last year. I got there around 10:30 (started at 10) and the place was already packed out. I was there from 10:30 until 1 when the cops shut it down for noise. I mean, 800+ people, of course it's going to be noisy. So much fun. I bloodied up my foot though, but it's ok. It started hurting again about an hour into the soccer tonight. Happens. My shin welp still isn't visible but it hurts and it's really hot. Weird. NOW it's time to go to sleep.

Skin irritation...

2010-09-18T22:05:00.002-05:00

So long story short, I have very itchy bumps around both of my eyes... NOT COOL. They have been bothering me since yesterday. I believe the culprit is my makeup.... it's probably just barely "too old" and needed replacing. I only put the base right around my eye, where I don't have any colour naturally, so I don't look like I have white raccoon rings. I tried to get a picture for you, but it's hard to do. They are faint, yet you can kinda tell something is off. Not to mention I haven't put much/any makeup over that area so I look ghastly. I just put a dab of cortizone itch cream hoping it would soothe... so far nothing. I'm just going to buy a new compact of my makeup and wait for the irritation to go down, and hopefully not get worse!

It's party time again! Graffiti party! I went last year and had fun and it's going to be even better this year! I've got my white shirt on and I'm going to be picking up my heart sis in just a few minutes to go! Can't wait!

In case you don't remember (or I didn't mention), a graffiti party is where everyone wears white shirts, the house is blacklighted, and everyone walks around writing on each other with highlighters so it glows. There's music too of course. When put into words, it doesn't sound nearly as awesome as it is in real life, haha! So pumped!

-Annie

Picture sums up my evening

2010-09-16T23:32:00.003-05:00

This one picture sums up my evening. This, and a picture of Sewer, the Rat, that I held, but I didn't get a picture with her. It was a fun evening!

(Disclaimer, this is not my pet. Her name is Frances)

Update + meltdown

2010-09-16T10:51:00.002-05:00

So I moved back to college and started work week for rush almost immediately. Work week has long hours but it so much fun! I really got closer to my sisters! Following work week was rush, which was even longer hours, but was a huge success! (Rush, for those who don't know, is a term for formal recruitment for the sororities/fraternities on campus). Rush and school started on the same day, so that made the long hours even longer. It's been neat to see my new sisters in my classes. Like in my anatomy class, we have a group of about 10 of us, which is awesome!

I'm still trying to recover from those two weeks. It's really hard to catch up, but I'm trying. This weekend is going to be fun too though! Football, parties, and bringing so of my freshman friends to my church! Just wish I could catch up on sleep somewhere in there... haha!

So opening up socially about having CF is having some repercussions I didn't expect... like people trying to baby me or mother me. No details, but one incident left me in tears. She meant well, 100%, and she had no idea that it would affect me, but it did. Another scenario, which is occurring more often, has me on the edge of anger plus tears too. This is not exactly what I had hoped would happen. This is actually my worst fear. I'm being labelled by my disease. How could I let this happen?? I want to fix it but I don't know how. Part of me wants to just stop mentioning CF completely and pray they forget. But what if I have to go to the hospital for something? They won't forget that. But I don't want to submerse myself in it because I don't want them to think I'm fragile, which is what it has come to. .........................

Running errands today then hanging with my sisters tonight. Gonna be fun!

-Annie

RUSH!

2010-09-12T23:28:00.001-05:00

Hey! Rush just ended tonight. I had temporarily donated my computer to Sigma Kappa for recruitment so I didn't have one! SORRY for the absence! I'll update again soon with more info! But right now, I have homework!

-Annie

Good Time Management

2010-09-05T19:15:00.003-05:00

Quick post/story about today

My schedule today was church, mock recruitment, and go home. The times were as follows:

Church- 9am to 10am

Be back at the Sigma house at 11:30

Mock Recruitment from 1:30-3:30ish

Workshop from 3:30-6

Skit rehearsal 6-we're done.

AHHH!!!

Somehow I had to fit in Cayston, which needs to be 4 hours apart, in there! How did I do it?? Good time management..........

..............in other words..........

I woke up at 5am to do Albuterol (fell back asleep whoops!) and did Cayston at 6am. I went back to sleep (on purpose this time!) until 7:something so I could then get ready for church. Then, between church and being at the Sigma Kappa house, I fit in my afternoon Cayston!! That was at almost 11am. That's 5 hours!!! WOO!! But if I hadn't planned out my day ahead of time, knowing how it was going to go, and then getting up early enough to get it done, my day would have gone very differently.

Mind you, if I had told our advisors/rush chairman that I needed to run back to the apartment to do some medicines, they would have let me go without any problem. But I didn't want to do that! I want to be THERE spending time with my sisters and singing the songs for the 1,395,599th time this week! I don't want to have to excuse myself from my LIFE because of CF unless I really need to. And today, it was fixable and I went very out of my way to fix it so I could be there when I needed/wanted to be.

Now, it's time for the evening dose of Cayston before I finish this round tomorrow afternoon!! Get excited, I know I AM! Just in time for Rush!!

-Annie

ps: I'm so glad my aunt and my sis-in-law got to come today! It made it even more special to me that you two came! THANK YOU!!

Rush Workshop: sick day

2010-09-04T11:42:00.003-05:00

Yesterday I didn't attend the morning workshop because I was curled up in a little ball on my bed unable to move. Awesome. I showed up for the second half of workshop (after lunch) when I felt just a little bit better. Every girl I talked to told me to go back to bed. "This week doesn't matter as much as next week when we'll really need you!! Take care of yourself now!" So, I followed my sisters' advice and stayed in bed/on the couch all day yesterday. I hated missing workshop, but they were right. And I feel a lot better today! And, just to show another reason why I love my sisters, they made me a get well card! A lot of the girls signed it and it really did brighten my sad, sick day and made me feel better. I love these girls.

My voice is lost every day of workshop and comes back the next morning. Current voice status: shaky. But I need it for tonight because it's FOOTBALL GAME NIGHT!!!!!!!!!!

Still super busy. I get a break in a few days. Sorta.

-Annie

Rush Workshop: Day 1... CHECK!

2010-08-31T21:48:00.002-05:00

Rush workshop.... so much fun. It's a LOT of hard work, but I love every minute of it. I love being with my sisters, I love the pride I have in my sorority, and I love all the things I'm learning!! I can't wait for this week to continue tomorrow!!!

To sum up my week....

-Andrea

Brief college update

2010-08-30T00:00:00.003-05:00

I just wanted to let everyone know that I am back at college, mostly unpacked, fully stocked with food, and already hanging out with friends on night one. I'm super super DUPER thrilled to be back and I can't wait for all the Rush stuff to start. And then classes. And then I can't wait to hate school and plead for summer. It's a cycle and I love it.

It's been a long day and I'm pretty tired. About to do treatment and hit the sack. Night! :]

-Annie

Cayston: Complete picture walk-through

2010-08-27T00:06:00.027-05:00

*Warning- a TON of pictures up ahead!*

*And click on the pictures for a CLOSE UP! And keep an eye out for my CF awareness band!*

*Lastly, thanks to DAD who took my cleaning pictures while I was demonstrating! A huge help, thank you!!*

Thanks to Feedjit, I notice that many of the searches that lead people to my blog consists of the word "Cayston". Since it's a new drug, I thought I would post a non-sponsored, completely my own advice walk-through of how I clean and use Cayston.

It starts off with the cleaning and then moves to the usage. Sorry, it's late, so I posted them backwards. You'll live. Just scroll down if you want to read the usage part first. It's labelled with a big, fat title.

Disclaimer: This is information I have either gotten from the CFF website, from the information sent to me with Cayston, or my own variations. It is not official medical advice, just something I thought might help people who were as lost as I was when I first started Cayston.

Mom's Disclaimer: Sorry if you see any sort of messiness or clutter. Pretend you didn't see it and move on. Thanks!

CLEANING!!!!

First, you need to get some dishwashing detergent that is *NOT* antibacterial!
For cleaning, this is the setting and the actors: dirty Cayston pieces, the detergent, and the Ziplock containers they sent with the Cayston stuff for the first time.
With warm/hot water, we rinse out all of the non-metal Cayston pieces...
....and place them in the Ziplock container, which is filled with detergent and warm water.
I usually separate the grey piece to make sure I get it all washed out. (WARNING- if you have a sink with two halves, use the side without the open drain! If not, cover it up... you don't want those pieces falling in!)
Rinse....
...and drop in the same container as the body.
Rinse both the blue rubber piece...
.... and the mouthpiece thoroughly, getting all of the openings too.
And in they go with the other plastic pieces.
Close the lid.... (but don't turn it all the way, because it's really hard to get back off)
...and shake it up!! Warning, water will go everywhere.
Rinse the head in a slower stream of warm water... both sides. (Note: this is also done immediately after finishing a Cayston dose)

Open the container with the plastic/rubber pieces and rinse them off individually with the warm/hot water. Set out to dry (see later picture)

This is how I set them out to dry. They don't stay here but more than a minute while I set up the sterilizer (aka Nuk baby bottle cleaner that they sent with the first Cayston dose)
Since I also washed the containers while washing the pieces, I set them out to dry. (For each paper towel piece you see, there is a second one under it, giving it a double-layer)
In the front of the baby bottle cleaner, there is a measuring cup. It took me WAAY too long to find it on my own, sadly.

Fill up to about the top.

And pour it in the metal pan
Here is the gut of the baby bottle cleaner.
This is where the main piece will hang, using the hinge of the piece. It will only fit 3.
Here's the top rack of the baby bottle cleaner. This is where everything else goes. I have mastered fitting in 3 Cayston sets in here without anything overlapping. Observe:
First goes in the head, which cannot lie flat. However, they fit perfectly around the legs of the middle knob.
Like such.
Next comes the assembled top piece, which fits between each head, making three points on a triangle.
The rubbed blue pieces, which I lay "face" down, will cozy up to the grey tops nicely.
And that leaves plenty of room for the mouth pieces. Perfection!
So now we put the gut of the baby bottle cleaner back on the metal pan
The rack on top of that
And then the lid!
Now, we have the one solitary button on this machine. What to do?

We push it down of course! Oh look, a light comes on! It will run a few minutes (the book says 8 I think, but it never seems that long to me) and you might hear a quiet "pop" noise. That's it for an alarm. However, you don't want to open it immediately after it's done, since it will be super hot and steamy (like me... juuuust kidding). So give it a few more minutes and take the lid off. It will be covered in condensation. I turn it upside-down, hit the knob on the counter to gather the water, and dump it in the sink. Problem solved.

This is how I lay them all out. Notice I open the grey pieces because the white part retains water. The blue rubber part doesn't air out well, so I prop it up on the mouth pieces and it does much better. Can you tell I'm an engineer's daughter?
I also prop the lid up so that it can finish drying too.

USAGE!!!!!!!!!

A little while later, after everything dried, it's time to do a dose!!! This is the glass bottle and plastic ampule that will be used. They are kinda cute.
First, we need to assemble the pieces. Take the large plastic one and open it.
The head goes in that funny looking side as such. It kinda snaps in.
The blue piece goes in opposite the head.
Close it!
Attach the mouth piece
This is where it connects to the power source/machine. It has a hinge and GENTLY snap it on. Mine is already broken in two places, but still works just fine.
This is the almost ready Cayston piece
The machine
The battery compartment is in the grey area. But if you don't want to use batteries...
This is where the hole is for the other end of the wall adapter. It comes with the Cayston stuff as well.
This end is for the hook up of the grey piece we already attached to the mouth piece a few pictures back.
We need that cute glass bottle again! Take the aluminum tab, pull down, and start pulling around to get it completely off. It breaks occasionally and can be a pain, but it needs to come completely off.
It will look like this!
Empty the ampule into the glass bottle, put the grey stopper back on, and SHAKE! It needs to be clear to inhale properly.
Pour it into the top of the mouth piece. It will only be about this much.
Put the grey piece on and turn to make sure it is closed.
Press the solitary button and hold for a few seconds. It will beep...
....and this screen will appear after the PARI screen. This means Cayston is going!
No talking! It's very short so if you need to take it out of your mouth, press the lonely button and hold to stop the treatment. It won't be happy with you, but it works. Like that I'm in the kitchen still?
It will beep 2 times and show you this screen when it's done. (Sorry it's hard to see) It lasts around 1 1/2 - 2 minutes. My piece will sometimes "click" a few times right before it's done, but I'm not sure if that's everyone, but if you hear that noise, don't panic!

GENTLY pull downward on the grey back connection to release it.

Open up the body and free the head. (It has tabs on the side you need to push in to get the head out)

Rinse both sides IMMEDIATELY after usage, and set out to dry.

And as an added bonus of fun, those nifty Ziplock containers they sent, they hold the Cayston pieces perfectly (probably the reason they sent them!)

Hope this was helpful!!

Link to the CFF Cayston video

-Annie

Haircut picture

2010-08-25T14:24:00.002-05:00

Here's a picture Mom took with her phone. Hard to see the subtle highlights, or the layers really, but I thought it was a pretty good picture.

-Annie

5 more days....

2010-08-24T23:08:00.004-05:00

I'm so ready to move back to college I can't even explain! 5 more days...

Oh, today I got a my hair cut and coloured!! It looks so good! I wish I had a picture on my computer, but the best one is on my mom's phone, but I'll post it soon. Nothing drastic, just subtle highlights and long bangs and layers. I'm *really* happy with it. Picture soon, I promise.

Also, I ordered a CF awareness bracelet from Fatboy and I LOVE it. He and his wife shipped it soon after I ordered it and it came when they predicted it would! That's better than most companies online! Follow the link and I encourage everyone to buy one! 25% goes to the CFF, so it's for a good cause too! I was anxious about buying one for fear of being labelled (this time with a bracelet) of being THAT KID with CF. That sick kid. After mulling over it for a few days I decided to throw my fears to the wind and order it. I feel so much more proud of myself now that I wear it than before. I'm not afraid to talk about it either. I talk with confidence knowing I am stomping CF into the ground with every breath I take. I'm winning and there's nothing it can do about it but fight back. Luckily, I'm a much better fighter.

Anyway, I reiterate that everyone should order a bracelet!

For some reason I've been having weird stomach issues. Not my usual stomach issues, but new issues. That's never good, but nothing too seriously worry about yet. Just not feeling fantastic in a new way. It comes and goes but when it wants to, it will take me out of life completely for a little while, mentally at least. It's all I can think about when it happens, it's so bad sometimes. Hopefully it won't come back.

Ok, I'm tired. Another day before I move back has passed. :]

-Annie

Silent Sunday

2010-08-22T16:51:00.000-05:00

Being a Mommy is HARD WORK.....

2010-08-19T12:29:00.004-05:00

.....so I'm glad I'm only an AUNT!

Sarah, the sis-in-law that went with me to Boston, packed up her bags and flew to California with other family members! My brother is busy with his full-time job and his online work to get his masters degree. He's swamped! So I got asked (and of course accepted!) to help take care of my sweet nephew Carter while Sarah was gone. So almost every day I have been taking him or picking him up from day care and keeping him the rest of the day. Today is my day "off" since I took him to daycare this morning and my brother is keeping him for the night. I'll have him all day and night on Friday though! I love that little kid to death, but I'm so tired! He just wears me out! It's hard work being a full time Mom!!! I had always been told that babysitting is great birth control! lol

I'm so behind on things I need to get done. My room is *still* a disaster, I need to wash my Cayston pieces for this afternoon's dose, I need to shower (groossss), and several other things with deadlines coming up in the next 3-4 days!! Maybe I'll be motivated after I finish this post. I work better under pressure...

I've made a point to avoid phone calls from pharmacies, drug companies, etc. ever since I turned 18. However, they are starting to ask for me instead of my parents. While I've been typing this, I got a call from the people who ship Pulmozyme. I ignored the call, but then felt kinda guilty. So I called them back and went through their automated system until I finally reached a real person. Turns out, they were just calling to inform me that Pulmozyme was shipped.

Thanks.

I don't know how, honestly, but I'm an entire box behind on Pulmozyme. I mean, I'm almost done with the box I'm on now and have a full one in the fridge and now one on the way!! How did this happen?! I don't skip, especially not an entire box's worth! Oh well. Better than needing it and it not shipping on time.

Oh, and I forgot that I need to drive out to my brother's house (outside of town) and deliver the Pack 'n Play and let out their dog... well... I wouldn't call Coach a real dog. He stopped trying to make us believe he was a real dog a long time ago.

Here are a few old pictures from when McKenzy and Coach were younger, just because I want to post a picture today.

-Andrea

Auntie Anne week

2010-08-16T08:12:00.003-05:00

This week, starting today, I will be taking up a lot of responsibility with taking care of Carter, the nephew! His mom just left on a vacation to California so I'm helping my brother with his daddy duties! Also, I'll get to spend some quality time with brother #2, and I'm pretty excited about that too.

Not too much to report on since I've been home that I haven't already mentioned. My backgammon addiction is growing, but I taught Chris how to play and he likes it too! I was not going to order my own game to take to college because I was afraid no one would want to play with me, since it's not a common game anymore. But now that Chris likes it, I'm reconsidering ordering one! I'll just use my Amazon money, thank you Zenpep!

And lastly, I knew Harry Potter was a good book, but McKenzy found it especially enticing....

Ugh. Dog.

-Annie

Boston Trip: recap!

2010-08-12T22:52:00.017-05:00

My Trip to Boston/Plymouth with my mom and my sister-in-law, Sarah!

Day 1- Thursday August 5:

I woke up at 4:30am to shower, do treatment, finish packing, and then go pick up Sarah and drive to the airport. I'm not a huge fan of flying, but oh well. We get checked in and head for security. I checked in my regular bag, plan on gate-checking the Vest, and carrying on a backpack. As they check my bags in their scanner thing, it's no surprise that the Vest gets sent for hand inspection. *Sigh* I guess it does kinda look like a bomb in the scanner. There are a lot of wires! I go watch the man search the Vest and test it for "explosive residue." None, of course. I haven't been making explosives while doing the Vest... that's not really a good idea. My hands tend to get shaky... along with the rest of my body. Anyways, SURPRISINGLY, the man hand-checking the Vest asks if this was the machine that inflates and shakes me. "Yes sir." I was really in too much shock that a random African American man at the airport knew what this was. (I mention his race because CF is rare in African Americans.) I thought that was pretty cool. I gate-checked the bag and

boarded the plane. I sat by the window and Sarah sat by me. Across the aisle was my mom sitting next to a woman who looked mid/late 20s. We learned later she was going to a Twin convention! Her twin lives elsewhere and was meeting her there. We land in Atlanta, race across the airport, and get on our second flight. I got irritated because they do not gate check on these larger flights! So we had to figure out where/how to shove the Vest into the overhead compartments. That was a hassle!! But it was better than the airline employees throwing it with the other luggage...

Finally, we arrived in Boston! We grabbed our luggage and headed for the rental car place. Straight from there, we went to the JFK house! That was really cool. I enjoyed seeing how the house was set up and listening to Mrs. Rose Kennedy talk (recorded tour) about the things she remembers in each room. When it was time to leave, the rains came down!!

The streets were flooded and being out from under the umbrella for 2 seconds (literally) to close the trunk that Mom accidentally opened (LOL!!), I got drenched. It was wild. We drove to our hotel from there and got settled in. We had to fight for a fridge to keep the Pulmozyme cold because "somehow" the orders to send a fridge to our room (which we requested 3 times) kept getting ignored/lost/something. Finally, it showed up and Pulmozyme stayed cool. Our hotel was the Sheridan that was attached to the Prudential Center: prime location. From there we rode the T and headed to Quincy Market (Faneuil Hall) where we dined and shopped! That's where I took a picture in front of the giant Macaroni! There was also functional replica of the "Cheers" Bar and we stopped by there for a few. When it started getting dark, we went back to the Prudential Center and went up to the top of the tower and looked out over Boston. Day 1 came to an end.

Day 2- Friday August 6:

We woke up early so we could check out and headed out to Boston Commons, the Central Park of Boston, to enjoy the weather and eventually start the Freedom Trail. However, we were going to have to leave our car parked for most of the day, unable to check in at Plymouth until that evening. I still had to keep Pulmozyme cold. This is where my creative skills come in handy!! I had 4 fake ice cubes that were in a ziplock baggie with the Pulmozyme. Around it were multiple pieces of paper towels for "insulation." That baggie was in a baggie, the one that hotels give you for your ice bucket, full of ice. Around that were two more baggies like that that the nice cleaning lady gave us. Around that was another ice bucket baggie full of ice. Around that were two more ice bucket baggies. Here's a picture with the bag next to a normal sized hotel phone. Crazy, I know. We'll see how that story ends later. The Freedom Trail is a tour of special places in Boston that you walk to. You can either be guided as a group or guide yourself, which is what we did. You just follow the red bricks (or the map) and go to each location. It was really neat.

Stops on the Freedom Trail (bold means we visited them): Boston Common, Robert Gould Shaw Monument, State House, Park Street Church, Granary Burying Ground, King's Chapel, Old Corner Book Store, Old South Meeting House, Old State House, Boston Massacre, Faneuil Hall, Paul Revere House, Old North Church, Copp's Hill Burying Ground, USS Consitution, and the Bunker Hill Monument. We spent a lot of time at almost every place. I loved the cemeteries because it was so impressive how many people lived into their 70s, 80s, and 90s, even back in the 1700s. We did a guided tour of the USS Constitution, "Old Ironsides", which was really awesome. From there, we went back to our car and headed to Plymouth. We met some crazy drivers on the way! Little did we Southerners know, the emergency parking lane, aka the shoulder, is actually a driving lane... or so these crazy Bostonites think!! It was hilarious and scary all at once. We finally make it to Plymouth, sometime around dinner. We check into the Radisson and request a fridge. Instead of waiting on it, we go out in search of food. We found this tiny (and I mean TINY!! only 12 tables) Italian place and ate there. We headed back to the room for the night, and realized we still didn't have a fridge.... nor did we have any extra plugs! In this normal sized hotel room, there were 4 outlets, one being in the bathroom. One next to the bed, for the lamps/clock. One for the TV, and one with 2 lamps plugged in. I plug the compressor into the one empty slot with the TV and unplug one lamp for the Vest. However, when the fridge arrived, there were no available plugs. The service man had to go get a power-strip to accommodate everything. 30 minutes later, the fridge was cold and it was time to test my baggie ice-pack. I stabbed it open, poured out all the ice, found the baggie with the Pulmozyme in it and.... *drumroll* it was still very cold!! My super-baggie worked! And it lasted all day. I was impressed with myself.

Day 3- Saturday August 7:

We slept in a little this morning, and it was much needed. We started off our day visiting/touring the Mayflower II. It is a replica of the real thing and it was pretty neat. There were a lot of people crammed on that ship! Just past the ship was a dock where we discovered it was a prime picture-taking location. From there we visited Plymouth Rock. This is me squishing the rock. All of this was in walking distance from our hotel, including little shops and lots of food. We shopped around until it was time to meet Lauren! We met at the Cabby Shack, which had delicious clam chowdah. The 5 of us (Lauren and her man Kyle came) ate a large table so Lauren and I could keep our distance. I thoroughly enjoyed the lunch, with the only exception that I couldn't give her a hug!!

Even though I had literally just met her, because we've been keeping up with each other for a while now, I feel like we're old pals. :] This is one cyster who I plan to keep in touch with for a long, long time. We took pictures with/without our matching pink masks after lunch before we had to part ways. From lunch, Mom, Sarah, and I went to a plantation where they built a Native People village and also a settlement from the 1600s. These places had people walking around in costume AND in character. When we asked them questions, they answered in the language of that period and as if we were all there now. It was pretty cool. The English settlement was more realistic because it was bigger, more elaborate, and I didn't get hit on by the "actors" there, unlike the Native People village. Two of the guys were very eager to take a picture with me and Sarah, "two lovely Louisiana ladies!" After the plantation, we went back to the hotel where I read a book, Sarah napped, and Mom did some shopping. It was already kinda late, but we woke up and got dinner around 8pm at a local pizza place. We headed down to the jacuzzi to soak our tired bodies, but the pool was filled with lots of loud children that it wasn't very relaxing.

Day 4- Sunday August 8:

We got up a little earlier than most of the days on the vacation to load the car in preparation for the beach later on that day. We hit the road towards 2 lighthouses, a long trip due to the distance and the HORRIBLE traffic. There was apparently some bike race in town and traffic was nearly stop-go the whole time. What should have taken between 1-2 hours, took about 4. A waste of a morning, but it was ok.

We made it to the first lighthouse in Cape Cod. We got to go up in it and see out at the top of the lighthouse. It was a pretty cool deal. On our way to the next lighthouse, we stopped and got lunch at a little family-owned place. The beach of the second lighthouse was at the beach we had wanted to go to. However, the guy who was in charge of directing traffic around the parking area said that the wait in line to get a parking spot was *and hour and a half*. WHAT?!! He said that people get in line before 8am to get a parking spot at this beach. How crazy is that?! We got to park illegally for 10 minutes to go see the lighthouse and leave. We took that deal and headed down the road to a different section of really the same beach. You had to park a mile down the road and either walk or ride the shuttle to the beach. The shuttle stopped going at 5:30 and it was about 3 something when we got there.

Let me just say now, the weather was IDEAL. Sunny, maybe 80 degrees, but with a very nice and constant breeze. I took a nap for over an hour out there. It was fantastic. At the beaches down South, it's super hot and you just sweat to death because of it. Not where we were. Oh no. It was perfection at it's finest. The water, however, was a different story. 61 degrees. I put my feet in and screamed. TOO COLD!!!!!!! It was bearable after a while, but you had to get used to it first. My feet were numb for part of the time they were in the water, that's for sure. And there are no shells. Well, barely any shells. They have rocks instead. It was interesting. There was also this area between the really sandy area and the water where it was just a low sand area with water. It was perfect for little kids to sit in and play in the water without having to worry about waves. We watched a kid crawl around in it. It was adorable. The other major difference was that there were no condos or anything commercial. Just beach. It was really refreshing. Although it was way more crowded than I've ever seen any Florida beach, it was still worth the long car ride. We stayed later that 5:30 and walked the mile-ish hike uphill back to our car. Still worth it. That night we ate at the WeatherVane, where we had a coupon to, and I LOVED it. That night, we went down to the jacuzzi again and it was much more relaxing since the 2 wedding parties and the family reunion had gone home. Great way to end the trip.

Day 5- Monday August 9:

Another travel day. We loaded up the car and headed for the rental car place to turn the car in. On the bus from the rental car place to the airport, I realized I left my phone in the rental car. GREAT. Wasted another 30 minutes getting my phone back and cutting it tight on trying to make the flight, but we made it. While waiting to take off, the captain gets on the speakers and says something like "We have a slight delay. The spring on the cargo door is broken... it won't take long. They are just going to tape it shut and we'll be on our way." We cracked jokes the whole way about our luggage falling into the Atlantic due to a broken cargo door and the duct tape not holding at 10,000 feet. Sure enough, after we had switched flights in ATL and got back home, we realized we didn't have any luggage. COOL... this is why I didn't check the Vest in and kept it with me. (It got searched again at the Boston airport, by the way. This time the lady asked if it was an oxygen tank..... umm no??!) We got home around 4pm ish. My luggage made it home at 12:30am that night. It was not wet, so I assume it was just on a different flight and not in the ocean. :] Oh, also, on the flight from ATL to home, we ended up sitting with the Twin again on the flight back!! How funny is that?! We heard all about her trip and how her and her sister won 3rd place in "Most Alike"! I didn't even know they did stuff like that!

It was a great trip, if you can't tell!! I had a lot of fun! Here's one more picture to share: it's from the Prudential building. There was a Red Sox home game that night... look how packed the stadium is....

-Annie

Hot off the Press: ME!

2010-08-10T16:15:00.006-05:00

EXTRA EXTRA!! Read all about it! Boston trip overview: currently put on hold. A more pressing matter has come up! Read on!

A few weeks ago, my dear author friend Betsy asked me if I would send her a little paragraph on what going back to school means to me. "Sure, no problem!" She asked me to throw in a little about my CF and how it makes going back to school a little different than everyone else. "Done." I thought I would end up seeing a link to an article in a few days. However, that's not at all what happened.

I get a phone call at 10 a.m. one morning waking me from a light sleep. "Hi this is Lora with City Life and I'm calling to see when you will be available for the picture for the article about Back to School by Betsy St. Amant." HOLD UP. First off, let me gain consciousness before I can even think to comprehend what you're saying. I was so confused, trying to figure out what this lady is talking about, all while trying to wake up. Picture? City Life? What is going on?! She arranges to come by my house that Thursday to photograph me. I sounded like a complete fool trying to give her directions. I'm pretty sure it came across like I don't know where I live. But, somehow she found my house that Thursday.

I doubled checked with Betsy to make sure this lady was legit and learned that Betsy's story was going to be the cover story for the City Life magazine that's sent out in my city every 2 weeks! COOL!!! It came out today and it is a great article, so please read it! Here is a link: City Life!

The article starts on page 14, the part on me and CF is on page 15, and the picture is on page 16! (If you're looking at a real copy, the pages are off by 1).

I'm really thrilled about how the article turned out!! It's so well written. Please take a few minutes to read it!

-Annie

ps I graduated in 2009, for those who noticed. :]

Boston Trip-- COMING SOON

2010-08-09T23:24:00.006-05:00

I am tired! I have SO much to say about my Boston/Plymouth trip, but now is not the time! It will come soon (and hopefully so will my luggage... which got left behind somewhere, thanks to the airport)!

Until then, read Lauren's blog, where she tells about part of my trip: MEETING HER!!

Here are a few pictures from my trip to hold you over until the full write-up!

And these pictures don't even begin to tell the many stories!!

-Annie

Comment Error

2010-08-04T23:08:00.003-05:00

UnknownCystic has brought to my attention (and I tested out for myself) that others are unable to post comments. You might see a message like this:

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Just know that I have reported it to blogger and I hope they get this sorted out soon. Until then, (and always for any reason) feel free to email me at the addy at the top of the page. I will be travelling (starting early tomorrow morning!) but I will check my email when I return, if not once or twice before that.

Sorry for any inconvenience!

-Andrea

My Tales of the Tanning Place

2010-08-04T17:03:00.003-05:00

Today was a great day! It started with my mom and I meeting my nurse practitioner for lunch. No reason, just because. We enjoyed about an hour long lunch, just chatting! It was really great.

Mom and I had more errands to run, but first: off to the tanning booth. I've never been artificially tanning and I'm not really for it, but we were going to get those Mystic spray tans. Fine. I wasn't thrilled, but we're going to the beach on this Massachusetts vacation and we're both ghastly white. We get there, pay for our sessions, and Mom goes first while I watch their "How-to" video. While waiting, out of the tanning room walks my friend Betsy! She watched the video with me (as we joked about how difficult it looked) and soon I was ready to go... or so I thought. The best advice I got from others: HOLD YOUR BREATH! "Crap..." I think to myself. I can barely hold my breath 10 seconds. This thing will not be good.

I finally get to the room and one of the workers puts in my spray tan bottle and starts up the machine. "Welcome. Please insert your tanning spray and run your hand over the sensor." She didn't run her hand over the sensor, so I did it for her after she left. OOPS!!!! That's how you start it! I haven't undressed, done my hair up, taken off my jewelry, put on the lotion, or anything!!! I run to the other side of the machine and press a red button. "Purge starting." I have no idea what that means, but I'm panicking. I run out of the room.... "Umm.. I started it. And I'm not ready. Then I pressed a button." Epic. Fail.

I had to wait a while for them to reset the machine, throw away that bottle of spray tan stuff, and put in a new one. *siiiigh*. Boy did I feel stupid.

I was ready like 10 minutes later (or so it seemed) and stepped into the machine, clothes-less, hair in a net, lotion on my hands and feet, and those weird eye things for tanning beds on my eyes. NOW I run my hand over the sensor (at the right time). If you haven't seen one of these things, they look a lot shower stalls. I get in, close the door, and wait to be sprayed. GROSS.... soon the stall filled with the mist and every breath tasted bitter and was sharp. I was taking small breaths and soon felt winded and light-headed. I was very glad to get out of there! It only took a few minutes, but man... that was rough!

Now, the key was to not get wet for the next 4-7 hours. It's a beautiful sunny Southern day, I'm sure I'll be fine. What we didn't think about was the HEAT and how we started sweating. Not good! I think we avoided streaking though, thankfully.

I think I'm tanner. I think. My feet, the bottoms of them, are ORANGE! It's kinda funny. Check it out:

Haha! Shows off my arch nicely.

-Annie

No FB and a good book

2010-08-03T23:29:00.004-05:00

So my facebook was shut off a few days ago: surprisingly a way less big of a deal than I thought. I haven't really missed it actually...

And instead, I've done a lot of reading! I just finished the 4th Harry Potter book and am about halfway through the 5th. I love these books and I'm really enjoying rereading them.

Today I got to see Carter for the first time in 2 weeks or so, and first time after seeing Kiarda. Wow is there a difference! It's crazy how much a difference 8 months makes in a baby's life. Wow oh wow.

I've been kinda anti-internet since FB shut down, actually. Which is why I haven't been posting much. I have gotten addicted to backgammon too! OH MY it's not healthy how much I play. Haha! I love playing against Mom, she's really good. She's the one who taught me how to play and the strategies of the game. I'm totally bringing this old school game back to college with me. Thank you Zenpep points!

Ok. It's currently Tuesday night. At 5:45am Thursday, I LEAVE FOR BOSTON!!!!!!!! :]]]] I'm super super duper excited. I won't have access to a computer while I'm there so no blog updates until I get back, but with it will come a picture with me meeting Lauren!! This trip is going to be fun! I can't wait!

I had mentioned a few posts back that I moved the Vest to the morning. I also moved Pulmozyme to the morning too, since those two go hand-in-hand. I like the results. I think I might need to add a second Vest treatment to the evening, but I definitely need it in the morning too. I get a lot up and out with the morning CPT.

Night!

-Annie

Countdown to move back to college: 26 days!!!!

Wordless Weekend

2010-07-31T19:02:00.001-05:00

Busy, as usual!

2010-07-29T21:28:00.002-05:00

Sorry I haven't been posting! Been busy with babysitting! It just wears me out. But I've made some good money this week!

I went to Tokyo (the restaurant!) with the boyfriend last night. We hadn't been out in a while, much less gotten to see each other that much lately, so it was much needed.

Leaving tomorrow to visit the brother/sis-in-law in Austin, TX! I get to meet my niece for the first time! There will be pictures. And then, just a few short days later, I go to Boston and meet Lauren B.!!! So much travelling! I can hardly wait.

Don't forget to keep checking up on CG's blog! She seems to be doing great!

Ok, it's only 9:30, but I'm pretty tired. Might play a game or two of backgammon or something with Mom before bed, but I'm about done.

OOOH!! Something exciting happened today, but I'm not going to spill until it comes out in two weeks! :]

And, if you're a facebook friend of mine, I have to shut it off for over a month starting July 31st. So I'll be here more instead!

TTFN

-Annie

Cystic Gal GETS HER LUNGS!!!!!!

2010-07-28T09:21:00.002-05:00

CG got the call yesterday for new lungs!! I don't have much information (other than what I read on other sites) but the surgery is over and I think it went great!

http://cysticgal.blogspot.com/

These are the few updates and they will continue to be posted there.

CONGRATS CG!!! I'm so happy for you

-Annie

Sleep, Zenpep, and new walking shoes!

2010-07-25T17:37:00.004-05:00

How many hours of sleep did I get Saturday night? 10, and woke up still sick, but not tired! I was miserable Sunday morning.... again. Mom gave me a mani/pedi to help make me feel better. That combined with my puppy helped. I tried eating some food, since I hadn't eaten since lunch the day before, and I felt so incredibly sick afterwards. Luckily everything stayed on the correct course south, if you know what I mean. Sunday night, I hung with some of my very favourite people: Casey, Alissa, and Vizza. We had a girl's night at Alissa's house and had a great time catching up! I felt just slightly sick last night/this morning too. Not ok! I'm taking all the meds, so I should be feeling fine. We even upped my enzyme dosage... ugh I'm keeping an eye on it.

Sunday my mom and I went new walking-shoe shopping! We both needed good shoes for walking all over Boston and we found some! I got the Asics Strike 2 and I love it. (The colours aren't right on the link: I got purple and silver; I searched online for 20 minutes and never found my shoe in the right colours online, so that's the best I can do for ya!) They are the most comfortable shoes I've ever put on my feet. My mom also got a pair of Asics and she loves them.

I joined the Z-points program! It's for those people who take Zenpep enzymes. After I registered and logged in all of my Zenpep bottles, (including one I went recycling bin diving for thanks to Mom) I had enough points to order two $50 Amazon Giftcards!!!!!!!! I'm saving up for a Kindle! Almost every month I'll have enough points to order another card, and I'm really excited about this. It's kinda like back when TOBI used to allow us to order a $5 Blockbuster card or a $5 McDonald's giftcard with each TOBI refill, except 10x better (literally). Thank you, Zenpep!

If you are not a part of this program yet take Zenpep and want to be, LET ME KNOW because I get a lot of points for each person I refer.

Time to Wii Fit!

-Annie

Gut problems: day 4

2010-07-24T23:22:00.004-05:00

STILL SICK.

I ate lunch today. That's it. Do I feel hungry? Not in the least. I actually feel like I ate dinner about an hour ago. Not stuffed, but not wanting to eat. And Dad even cooked potato soup, which I LOVE!! Luckily there are plenty of left-overs for when I feel better.

I've been having serious issues with waking up. Not sure what's up. It's amazing how long I can sleep. I'm about to try it tomorrow. Because of how miserable I've been, I'm sleeping in tomorrow instead of going to church. I'm going to try and get as many hours of sleep in tomorrow as I possibly can. Let's play the game: How Long Can Annie Sleep? Any bets? I'm thinking 11 hours and I still wake up tired. I'm going to go to bed at midnight tonight (finishing treatment now) and wake up and get out of bed whenever. No alarms, nothing. The dog will wake me up, but with the way I've been sleeping, it won't phase me in the least. I'll pass right back out. It's almost like I'm sick, but side from the gut stuff, I don't feel sick. And the gut stuff is not normal sick, it's "me sick". Which isn't really sick! Man oh man this is complicated.

I caught up with an old friend of mine! Lucy became my friend in kindergarten, back when everyone thought we were twins, and stayed close until she went off to a different high school and college. We grabbed some Starbucks and sat in a park and caught up today... it's like we were never apart! She really brightened my day! Thanks, Lu. :]

Almost bed time!

-Annie

Every Life has a Story to Tell

Nov. 14, 2011

Where did I go?!

Back to the grind!

PICC Tales- the last full day (Picture heavy)

No pictures still...

Home IVs- Night #1

Hospital Days- Monday

Hospital- Quick Sunday Update

Hospital Stay- Saturday

Hospital Days- with some pictures!

We have WiFi!

"When"

First update-

30 minutes

This week

Class in 30

Moving and School

Internet's Back!

Quick Update

It's Tuesday!

*sigh*..... Apologies and Excuses

Summer, goals

Summer. Finally.

Benefit of having CF

The Vest: Friend or Foe?

Wordless Wednesday

Health update + family time

Sick-- first time in forever

24 days and a funny video!

Running against my will!

2 Years!

Body talk

Fear can sometimes be encouragement

Interview with Fatboy and Beautiful!

My Anatomy & Physiology II lab experience

Something to look forward to...

Doctor's Appointment update!

Baby Picture time!

Annual Blood Draws- my secret weapon

Parents, tattoos, and surgeries

Hello, 2011!

Merry Christmas!

A Christmas gift to myself

Long time no see!

New post soon!

I'm Published!

Video of hope

Back in the swing of things

Thanksgiving Post

Every Life got an award!

JM update

The Call for JM

Greetings, from the other side of finals week

3 Finals down + pictures from the weekend

MIA-- sorry!

Birthday gift from the 'rents

Doctor's Appointment recap!

Birthday weekend

Birthday!

Hemoptysis update #4

Hemoptysis update #3

Hemoptysis update #2

Wordless Weekend

Hemoptysis update

Hemoptysis

I haven't forgotten...

Great Strides walk- part1

Wordless Wednesday

Doctor's Appointment recap

My lungs...

My life is always busy....

Sigma Kappa sisters are REAL.

A little of this... a little of that...

Everything huuurrrttsss

Skin irritation...

Picture sums up my evening

Update + meltdown

RUSH!

Good Time Management

sigh..... Apologies and Excuses