Some topics I cover
allergy article blogs body image Carter Cayston CF church college compliance coughing crawfish depressed diet doctor dog embarrassing story ENT enzymes ER exercise family FEV1 fire alarm food friends fundraising future genes goals God grades graduation Great Strides gym hemoptysis home hope hormones hospital Husband Kiarda kids lab lifespan lonely Louis lung function lung pain lungs medicines message to CF money pain PFTs PICC line pictures pneumonia running RunSickboyRun ShAIR sick Sigma Kappa singing sinus surgery sinuses smoking soccer stress TOBI transplant treatment Vertex Vest video walk-through weight workout Zoe
Saturday, July 31, 2010
Thursday, July 29, 2010
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!
Wednesday, July 28, 2010
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!
These are the few updates and they will continue to be posted there.
CONGRATS CG!!! I'm so happy for you
Sunday, July 25, 2010
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!
Saturday, July 24, 2010
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!
Friday, July 23, 2010
These last few days have been really rough on my gut. Remember those stomach problems I have? The stricture in my colon? Yeah, well it gives me problems sometimes and these last few days have been rough. Today while I tried to cook dinner (because I needed to eat despite feeling sick), there were times when I had to crumple up on the floor in pain for a few seconds while the worst of it passed. I'm still doing that now, sometimes curling up and sometimes stretching out. I'm really not sure what makes to decide to curl vs. stretch, but neither really help or hurt, but it makes me feel like I'm doing something. I didn't finish my dinner, but I did get about half of it in before calling it quits. I was dreading doing my Vest this evening, with all of the stomach pain/nausea, when I remembered that I did (what I thought was) an extra Vest session this afternoon!! So yay for trying to be a get-ahead patient and ending up solving that problem before I knew I had one.
Mom refills my pill box when I'm home (yay!) and it looks much less intimidating now that we've gotten rid of a few pills. I've also, at the recommendation of one of the CF doctors at clinic, replaced the NeilMed saline sinus rinse with an Ocean Spray. I used the Ocean Spray right after my sinus surgery so I remember it from before, but never thought of using one over the other. I mentioned my nose-bleeds after using the NeilMed and how discouraging that made rinsing and hoped for a solution. We'll see if this is it!
Treatment is done, I'm so tired and maybe a good night's sleep will make my gut feel better... that's sometimes the case.
Thursday, July 22, 2010
So I'm exhausted from chasing 4-5 year olds this week. I've been doing craft projects at church and at home for these sweet [read: wild] kids and I'm beat! I've been with the boyfriend when I can since he's going to be gone to visit his sister again this weekend. So I'm putting off things like cleaning until then when I'll have more time. I'm finished the Vest/treatment at the moment which is why I'm still up. Mom and I just spent the last hour planning details of our Boston trip! It's so close!! I'm getting extremely excited. I'm not sure how I'm going to work Cayston into this trip, since I'll be on it while I'm there, but I'll manage!
I feel like posting a few pictures of Dixie, my last dog before McKenzy. Dixie died the summer before my senior year. I made the very difficult decision to put her down because she was so, so sick. I still miss her a whole lot, despite having McK. They are two
very different dogs. Dixie was very passive while McK is a much more active and crazy dog. They were/are both very sweet however. Dixie will always have a special place in my heart. I want to post a few pictures because I don't believe she really ev
er made it on the blog and she was such an important part of my life for so long (11 years) that it's only right she gets some air time!
So here we go: I love and miss you Dixie!
It won't let me post the last picture. Well I can, but it's rotated the wrong way. Never had that happen before. Odd.
Wednesday, July 21, 2010
DONE. Yes! It is always looming, it seems, but one more check-up has come and gone! Report:
Weight: 115 (down)
FEV1: 70% (stable)
Small airways: down just a tad
Today was not a good day health-wise because I hadn't eaten since lunch yesterday because I felt full/sick, another reason my weight was a little down. On the plus side, my daily number of pills was dropped!! I no longer need to take a daily D vitamin (switching to a once-weekly), my E and K vitamins are dropped, I'm down to one mucinex, and not more Zyrtec unless I have symptoms. YAY!!!!!!
I'm trying out some new shakes, even though I love my old ones. These cost less. If I love them too, I'm switching. If not, I'm sticking with the ones I love!
Now that that's over, on to the rest of my life. :]
OH! I wore my mask today at clinic!!! Everyone loved it.
Tuesday, July 20, 2010
Tomorrow is my next doctor appointment. Wish me luck... I'm really nervous, as usual. Mostly because of all the trips I've been on, I have not done as great a job of taking care of myself as I should have. Crossing my fingers that it doesn't come back to bite me with a PICC line and a sentencing to the hospital. We'll see. Report when I return, of course.
I thought for a while and realized that there wasn't much about camp I needed to post here. This is not the place. If you know me IRL, we've probably already talked about it because I have either talked about camp or the VBS I'm working this week with my 20 4-5 year olds.
I'm trying to do my Vest, but having trouble. I feel so sick. I keep having to pause it and let the nausea die down before starting up again. *sigh* 3 more minutes!
The Chili's CF Benefit went well! I know I handed out a lot of coupons (and left some with my server/management) and a lot of people I knew showed up with coupons they printed out. And that was only between 6:00-8:30 at one Chili's!! I can't wait to hear the total. I'll post it, of course!
I have paper bags to cut (the big ones) and make into vests for the kids at VBS. I'm half way done.
lalalalala..... not sure what else to type. I'm pretty tired, but not ready for 1pm tomorrow.....
Go Vest, go! Hurry!
Aaaaaannnndd... we're done! G'night!
Sunday, July 18, 2010
This is an old youtube video about a man named Greg McDougal.
He is a man with 4 kids, 3 of which have CF. One of his kids had serious problems with a common mold and now he is raising money to build a special house that is as allergen/mold free as they come. He is a country singer and a construction worker. He is raising the money with his CD's (and donations of course) and building the house himself. It's a great video (10 min long, but worth it) and a great story. That was back in 2006.
It's now 2010 and the house is almost complete! He updates his blog periodically and I hope you all can celebrate with him with the improvement in his son's health and the successful building of his new home. Please take a few minutes to watch the video and read his blog, A House for My Kids.
Saturday, July 17, 2010
Oh my GOSH. I can't even try to explain how happy I am to be home. I am EXHAUSTED and in PAIN right now, so I will not be giving an official update right now about how camp went and how I'm feeling since I have a doctor's appt in a few days. I will soon though. I'm just so tired. As an overview, camp is over and I'm not doing the second week. I can't. It was a very very very long week. I'm glad I did the camp, it was a great experience, but it's not something I'm capable of doing a second time.
The pain is mostly in my feet from doing a ton of walking and the pain finally hit when I woke up from my nap this afternoon (first thing I did when I got home). My thighs hurt from yoga, dancing, and other physical activities I did this week. My calves hurt from a 1.5 mile run I did (in not bad time). My back/shoulders/neck hurt from the stress of the camp. So right now, I'm trying to recover. I loved the campers I was in charge of, I hope they keep in contact, especially if they need to talk to someone. I made some awesome friends, the other counselors. I don't think I've ever bonded so quickly with a group of people I didn't know. As a group, we bonded so quickly because we had to! That was the only way to keep sane. I'm really going to miss our meetings and after-meeting meetings!
Ok. Time to veg out. I need my brain to shut down again. It's been waaaay too busy this week. This update was a little longer than expected, but hey- it's ok.
Thursday, July 8, 2010
I move to camp on Sunday! It's almost here! I've spent a large chunk of the day making phone calls to all of my campers to confirm they're coming, check shirt sizes, etc. It was quite the flurry of phone calls to and from me, but in the end it has mostly been sorted out. I have a few more phone calls to make tomorrow, some to my director and some to campers, but by tomorrow it should all be set in stone! I was assigned 9 gir.ls... and they are all coming!! It's going to be CRAZY, but fun. I will be exhausted, so if you want to add someone else to your prayer list, PLEASE add me. I will be running on tired and stressed nerves this week, but need to keep a positive attitude, and cheerful spirit, and a leader to these kids. Also, I need to stay healthy since I have a doctor's appointment in the middle of the week after camp!! So keep me (and my kids) in your thoughts and prayers next week. I won't have a computer so I can't update while I'm gone, but I'll give the report early the following week.
ALSO! CALLING ALL NORTH LOUISIANA/EAST TEXAS FOLKS!!! On July 19th, there is a fundraiser for the CFF at Chili's! Present a printable coupon to your waiter at participating Chili's (in that area) and 10% of your check will go to the CFF! I'm rounding up a bunch of my friends to go eat there that night. Hooray for funding!!
Boyfriend Chris got a new job today. He finished working at camp yesterday and started work at an air conditioning company today. He's told me before, and he wasn't kidding: he can always find work. :] I'm proud of him.
Wednesday, July 7, 2010
I ordered one of those fancy "stylish masks" (link) and it FINALLY came in!!
It was ordered specifically for my trip to go see Lauren(!!!) but I'm also now using it for other mask-wearing occasions such as:
It was ordered specifically for my trip to go see Lauren(!!!) but I'm also now using it for other mask-wearing occasions such as:
- Around my mom because she's sick
- Around my nephew/niece when I'm sick so they don't get sick
- To scare my dog
- When I'm doing serious cleaning because the smell of the chemicals makes me sick
- When I'm in the hospital
Lauren actually found the site and we've both ordered one! I am going to start a trend at my clinic to see if we can get everyone wearing these fashionista masks!
Monday, July 5, 2010
Sunday, July 4, 2010
In case you missed the title, MY NIECE IS BEING BORN!!!!!!! Like, NOW!!!!!!!
I'm in Baton Rouge with Chris's family for the 4th of July, but I just wanted to post this exciting news!!!!
C'MON BABY K!!!!!!!!!! HURRY UP!!!!!!!!!! :]
Thursday, July 1, 2010
I had a very nice lunch with Dr. M., who cared for me when I was only an infant. She is still caring for premies/sick babies today. To sum up my lunch, here are two pictures:
Dr. M. and me THEN (I was out of the hospital by this point, obviously)