Thursday, February 28, 2013

Positive Thoughts Thursday

Sometimes I feel like I use this blog to vent/complain about things going on in my life, and I don't want to continue with all of that negativity. So each week I'm compiling a list of positive, happy, lucky, fortunate things that are going on in my life, or anywhere in the world.

  • HUGE update in the CF world this week! Vertex (the same company that created Kalydeco) is beginning phase 3 clinical trials to combine Kalydeco with VX-809 for CFers with the DDF508 mutations - this is about 50% of the CF population!
  • Although I have to reset my compliance count tomorrow, I am very proud of myself for sticking to my treatments for the past year (minus a week)!
  • My Great Strides team has raised $135 so far. We're about 6 weeks away from the first Great Strides!

Wednesday, February 27, 2013

Annoyed!

I feel like all forces are against me right now in completing an entire year of treatments!!!! I am VERY annoyed and disappointed to have to announce that I've had to miss/modify my treatments over the last couple of days because I ran out of meds! I know, I know, how can I run out of meds? It seems so irresponsible, but I have the pharmacy company and the lovely snow to thank for this one.

They won't let me refill my meds too early, and they're really good about sending me reminder emails when I'm due for my refills. I noticed that I was getting low on my Hypertonic Saline (HTS) and Pulmozyme so I went onto their website to get my refills. Also, I've been off Tobi this month, so I'm scheduled to be on it in March, so I added that to my list of meds I needed refilled. Typically when I submit a refill, I receive it in the mail about 2 days later. Well this time, I got a confirmation email from the pharmacy saying that I will not recieve my medications until Tuesday (5 days later!) because they weren't sending express orders due to the "inclement weather conditions". So this meant that I was going to run out of Pulmozyme and HTS before my meds arrived! Damn it!!! Over the weekend, I modified my treatments however I could to ration out the rest of my nebulizers til yesterday.

Well, yesterday when I got home from work, there was still no medication! It was too late to call, so I just figured it would just be another day, so I didn't bother emailing. I got an email this morning saying that my order is still delayed because they are waiting on prior authorization on my TOBI! AHHHH! I'm currently emailing them back and forth begging them to send me my medication tomorrow! Well, it looks like it won't get here until Friday. I'm so annoyed! I was about ONE WEEK away from my one year streak!

I'm not really bothered by the fact that I'll miss a couple treatments (I'll still do my Vest and Albuterol) -- that's not going to have a huge impact on my lungs. I'm more annoyed, if you can't tell, that I have to re-set my counter again!!!! I know it's not the end of the world and that I've been super compliant with my treatments since July of 2011 (I missed a couple in March of 2012 and now this mess), and it's made a great improvement on my overall health, but it's just the fact that I can't cross it off of my list! Guess it looks like I'll be starting all over, AGAIN, whenever they decide to send me my stuff.

Finally, I just wanted to apologize for not blogging very much lately. I feel like there hasn't been much going on that's blog-worthy, but at the same time, I feel like I've been super busy. I've got another "kinder quotes" in the making, so hopefully I'll be able to post that soon. :)

Thursday, February 21, 2013

Positive Thoughts Thursday

Sometimes I feel like I use this blog to vent/complain about things going on in my life, and I don't want to continue with all of that negativity. So each week I'm compiling a list of positive, happy, lucky, fortunate things that are going on in my life, or anywhere in the world.

  • Four day weekends are wonderful!
  • Even more wonderful is when my class votes to have a pajama day on the day we come back from that four day weekend!
  • 352 days and counting for 100% compliance with all treatments and medication! :)
  • I finally went running light jogging over my four day weekend. We have a complementary YMCA membership for a few months through my job, so I finally took advantage of it on Friday. I met one of my teacher-friends there and we walked the track for ~45 minutes, ran for ~10-15 minutes and walked for another 20 minutes or so. It felt so nice to start running again, even if I could barely keep it up for 10-15 minutes. I still haven't signed up for the 5k in March because I'm not sure that I'll be ready for it, but I think I just need to sign up and suck it up on the day of the run!
  • Twenty-three people have replied "Going" to my Facebook Great Strides event! I really hope that those 23 people do show up and also do some fundraising. If each person raised $100, we'd already be at $2,300! 
  • I was talking to a cyster last night who was going through a rough time and I gave her this advice, "You need to see yourself as a normal person. CF is just something that you have to deal with everyday - not something that controls the direction of your life." I realized that this is how I've been staying so positive, and I feel like people in the CF community (especially those who are struggling) should try to keep in mind. I'm proud of myself for coming up with such an insightful quote. :-)

Thursday, February 14, 2013

Positive Thoughts Thursday

Sometimes I feel like I use this blog to vent/complain about things going on in my life, and I don't want to continue with all of that negativity. So each week I'm compiling a list of positive, happy, lucky, fortunate things that are going on in my life, or anywhere in the world.

  • I woke up this morning to a beautiful arrangement of flowers sitting on my desk! :) I much prefer flowers over chocolate. Thank you honey, I love them and I love you! Happy Valentine's Day!
  • I have a four day weekend! No school tomorrow or Monday! I'm planning on spending the extra time on some exercise, lesson plans and relaxing. 
  • The Walking Dead is back on AMC and I love it. Tim and I have been watching from day 1 and have really enjoyed the show. I think each season it's getting better.
  • I've been 100% compliant with all of my treatments for 346 days today! :)
  • I'm happy to be happy and healthy!

Sunday, February 10, 2013

The Urge to Run

I never thought I'd miss running, but I really do. Tim and I have been doing some work out videos a few times a week with a weighted ball which have definitely increased my strength and balance, but I miss running. I know it's probably not the best idea if I'm trying to gain muscle and weight, but it was great airway clearance. I think I'll try to do some weight training a couple days a week with maybe a day of running, just so I don't lose the mileage I built up last year.

Today I tried to mix up my work out routine by doing a few different things, but it just doesn't get my lungs going like running does. This is what I did today: First I did the workout called "Kill Those Legs" to try to build leg muscle, then I did "Malibooty" workout which didn't do too much for me, honestly, and finally I ended with the Standing Abs video which was pretty good and went by quickly -- all of these workouts I found on Pinterest. Although I think these things are good for me, I just don't find them very exciting.

I need to take advantage of the YMCA membership that I have (for free) through my job through May. I'd really like to find a kickboxing class or something to join. I want to find something that will be good cardio and good weight training. The key is to build muscle, not burn too many calories. I should also take advantage of the Y's treadmills while it's still pretty chilly to be running outside.

I cannot wait until it warms up enough so I can start running outside. This Wednesday and Thursday are supposed to be in the upper 40s, so I'm hoping after work I can get outside and see how far I can go. It's been about four months (that have flown by) since I've run because I stopped after the Turkey Trot. I'm hoping that the workouts I've done over the past couple months have helped with my leg strength and will help me get back into my running groove faster.

I think I'm going to sign up for a local 5K in March, just to make myself get back into running. I loved doing races last year and I really want to do more this year. This one is called Penguin in the Park and it's on March 23, which gives me about 6 weeks to get my butt in gear. I haven't signed up yet, but I probably will this week. I need something to look forward to, and I think this is just the thing. :-)

Thursday, February 7, 2013

Positive Thoughts Thursday

Sometimes I feel like I use this blog to vent/complain about things going on in my life, and I don't want to continue with all of that negativity. So each week I'm compiling a list of positive, happy, lucky, fortunate things that are going on in my life, or anywhere in the world.
Beware: There's one TMI post....don't say I didn't warn you. This is CF: The good, the bad, and the ugly (gross).

  • I'm excited about a possible upcoming opportunity for me to help spread/raise awareness about CF with the help of some people in the CF community. :) I don't have a lot of information yet, but I will update when I learn more.
  • TMI: In the last ~36 hrs, I've gone #2 once! I know this may sound absolutely ridiculous if you don't know me or about CF, but to me this IS positive news!! Less bathroom trips = more absorption = weight gain. I recently (Feb 1st) switched my enzymes to Zenpep and I think that was a good choice. I was losing weight and having absorption issues lately, so I really hope this is the solution.
  • I'm learning how to control my sugars. I've completely changed my breakfast routine (again if you know me, you don't mess with my food - so this was a big deal for me) and its helped keep my blood sugars from dropping so quickly in the morning. I can now make it to lunch, even if I don't get my snack in, without having low blood sugars.
  • I'm also learning that I can't eat an entire box of mac & cheese in one sitting because it makes my sugars go a little crazy (high). I also can't eat a crap load of pasta in one sitting for the same reason. I'm really trying to work on less carbs per meal and more protein and snacks throughout my day. Some days are easier than others, but it's a work in progress. 
  • And because I don't talk enough about my job: We are officially counting down the days "until we are in first grade" in my classroom! Since we counted up to 100, we're now counting down for the rest of the year (we started at 70). We created a paper chain and we remove a link each day. I cannot believe how fast this year is flying by. 
  • One of my coworkers told me the other day that my class fits my personality and I could not agree more. They are well-behaved (most of the time), so fun to be around, say and do hilarious and ridiculous things, get a little too loud sometimes, and love snack-time ;). I just love them and I'm a little sad that I only have 68 more days until they move on to first grade.