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

Monday, November 14, 2011

Nov. 14, 2011

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.


Sunday, September 25, 2011

Where did I go?!

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!!!!!!!!


Friday, September 9, 2011

Back to the grind!

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"!


Wednesday, August 31, 2011

PICC Tales- the last full day (Picture heavy)

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!

Wednesday, August 24, 2011

No pictures still...

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.


Monday, August 22, 2011

Home IVs- Night #1

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.

Hospital Days- Monday

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!


Sunday, August 21, 2011

Hospital- Quick Sunday Update

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.


Saturday, August 20, 2011

Hospital Stay- Saturday

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.


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.


Friday, August 19, 2011

Hospital Days- with some pictures!

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!

Wednesday, August 17, 2011

We have WiFi!

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



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!


Tuesday, August 16, 2011

First update-

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.


30 minutes

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

Here we go.


Saturday, August 13, 2011

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.


Tuesday, August 9, 2011

This week

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.


Wednesday, August 3, 2011

Class in 30

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!


Saturday, July 30, 2011

Moving and School

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.


Thursday, July 21, 2011

Internet's Back!

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.


Wednesday, July 20, 2011

Quick Update

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!


Tuesday, July 12, 2011

It's Tuesday!

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!


Monday, July 11, 2011

*sigh*..... Apologies and Excuses

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.


Sunday, June 12, 2011

Summer, goals

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."


Thursday, May 19, 2011

Summer. Finally.

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.


Sunday, May 15, 2011

Benefit of having CF

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!

Wednesday, May 4, 2011

The Vest: Friend or Foe?

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!!


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!

Saturday, April 23, 2011

Health update + family time

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!

Tuesday, April 12, 2011

Sick-- first time in forever

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!

Saturday, March 26, 2011

24 days and a funny video!

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

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

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

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

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

Time to study. A quick video to make you smile/laugh until you cry (like I did!)
(Dad, and you thought MY dog has problems!!)

Wednesday, March 16, 2011

Running against my will!

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.


Sunday, March 13, 2011

2 Years!

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!


Friday, March 11, 2011

Body talk

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

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

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

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

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

Enough body talk for now.

Have a great day. :]

Thursday, February 24, 2011

Fear can sometimes be encouragement

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!


Monday, February 7, 2011

Interview with Fatboy and Beautiful!

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?

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!


Wednesday, January 26, 2011

My Anatomy & Physiology II lab experience


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!


Saturday, January 22, 2011

Something to look forward to...

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!


Tuesday, January 18, 2011

Doctor's Appointment update!

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.



Saturday, January 15, 2011

Baby Picture time!

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!


Thursday, January 13, 2011

Annual Blood Draws- my secret weapon

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.


Saturday, January 8, 2011

Parents, tattoos, and surgeries

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!

Friday, January 7, 2011

Hello, 2011!

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.


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.