Anna turns three on August 8th, so today we celebrated with our friends and family. I can't believe our little girl is three years old and will be starting preschool in just under two weeks! It was an excellent party and everyone had so much fun!! I love how close Anna is with her cousins and how much fun everyone has together.
Today marks six months since I delivered the twins
Six months ago, today, our twin baby boys were born. It hard to wrap my mind around the fact that this much time has gone by already. Sometimes I try to imagine what our life would be like now if they were born full term, but that makes me sad and it's impossible to know how things would have been different. But....we've had some exciting news to focus on the last couple months....
Today, we announced at Anna's party that I'm pregnant again with our rainbow baby!!
Anna will be having a new little brother or sister arrive in February 2018. She will also be having a new baby cousin! Baby cousin is due on the twins' birthday, February 5th, and our rainbow bean is due just ten days later!
This baby is already loved by so many and its arrival is very anxiously awaited by many as well. It's been a different start to pregnancy for me this time around because it's been stressful but exciting to be pregnant again. This time we went through IVF, which was different from Anna and the twins, but we wanted to ensure that we only got pregnant with one baby. There's a lot more detail in my "fertility journey" posts, but I'll just share a little of what is was like this time around with some pictures of the process:
Meds arrived - top box is CF med, bottom box is IVF meds
Everything that was in the box -- a little intimidating at first
Coaching my way through my first couple injections - it took almost 30 just to get pregnant
Here's our little rainbow baby as a 5-day embryo! This is RIGHT before they inserted it into my uterus.
A HUGE shout-out to Tim for giving me a nightly progesterone shot for 10 weeks! Every single night, from retrieval (May 25th) until yesterday, at 8:30pm, he would give me my dose of progesterone.....right in the booty cheek! He never once complained and was always so good about it!
So if you're keeping count, that's just about 100 injections over the last 12 weeks to conceive and maintain a healthy environment for this little bean. I have a lot more posts to share that I've been writing over the last 12 weeks, but we're very excited (and I'm a little nervous/anxious) to have this shot at being parents again!!
Last but not least, one month of compliance with my treatments since my birthday
In honor of our beautiful children, I've been working really hard over the last month to remain complain with my treatments. It was especially hard to hook myself up and shake tonight after such a long, draining (but super fun) day, but it's all for Tim & our kids! :) I plan to keep this streak up for a long time!!
I've now been on this earth for 29 whole years. I'm sure when I was born, I wasn't "supposed to" live this long....take that CF! Right now, the median life expectancy for someone with CF is about 40. Better live up these last eleven years....kidding! I plan to surpass that "limit" too. It's weird to think that next year I'll be 30. I thought we'd be done having kids by now and just spend the rest of our lives raising them, but obviously that's not the way things are going, and that's okay!
I'm very lucky and thankful to be as healthy as I am today. Ten years ago I never imagined I would be where I am today. I thankful to have Kalydeco to help keep me stable so that I am able to raise a family, work full time and live a full life. So, for the next year, I plan to be 100% compliant with my treatments. I want my last year in my twenties to be a positive push in the direction of my health. I'd really like to start regularly exercising, but that one is always harder for me for some reason. One step at a time, back on track with 100% compliance (although, I'd say I've probably been around 90-95% lately).
Thanks to everyone who went out of their way to tell me happy birthday today - you sure know how to make a girl feel loved. Anna and I spent the day with Tim's grandma while Tim was at work. We went to a baseball game last night with his sister, her husband and their two boys. After the game we were able to see an excellent nearby firework show. Since we were going to get back late, it was smarter for us to stay in town for the night. Today we had a nice, relaxing day, and then a long crabby evening from all three of us! We're all exhausted and worn out, but I wouldn't have it any other way....well, maybe without the two hour meltdown from the almost three year old!
Love my life. Love my family. Here's to another healthy, happy year. :-)
This year has been full of some really great ups, but also some really sad lows. We lost some amazing people in our lives, but we also gained one of the best gifts we could ever ask for.
Winter
The year started off rough, though, with the death of our friend (and fellow CFer), Jeremy. It was really hard attending the funeral of a peer as opposed to an elderly person because his life was cut too short, but we know that he is at peace now, no longer struggling for every breath. He left behind is wife, one of my good friends, who's been coping and learning how to live without him this year, but she's one of the strongest women I know.
The rest of the winter, we happily spread our news of my pregnancy, and finally made it "Facebook official" in February.
Spring
In March, we celebrated Tim's great-grandma's 100th birthday! I also hit 100% compliance with all of my treatments for an entire year! In April, I was halfway through my pregnancy and feeling amazing. We attended the Bloomington Great Strides and I hit 410 days of compliance. In May, I entered my third trimester of my pregnancy and my 100% compliance streak ended at 448 days because I forgot to pack my albuterol, duh!
Summer
The rest of the summer slowly crept by as we awaited the arrival of our daughter (and also the birth of our niece, Alayna). Our friends and family threw us some wonderful baby showers, and I spent the entire summer nesting and preparing to meet my baby girl. August 8, 2014 was one of the best days of my life! The day that our sweet little Anna Lily arrived!!!
Fall & Winter
In September, we took Anna camping for the first time, when she was only 5 weeks old. :) In October, my maternity leave ended and it was back to work for me, and to Grandma's for Anna. We also celebrated her first Halloween with her cousins and family. We also celebrated Anna's first Thanksgiving, and her first Christmas where she was spoiled beyond belief.
And at the very end of this year, on December 30th, we lost an amazing woman. Anna's great, great grandma, Anna Danner (who she was named after), died at the age of 100. I am incredibly lucky to have known her and so proud that our daughter will carry on her name. She was so kind, friendly and funny. She enjoyed her share of jokes, and would love to make people laugh and smile. I'm so happy that the births of Anna and Alayna kept her holding on just that much longer to meet them several times. It's not too often that someone can get to know their five great, great grandchildren. We have so many memories and photos that our family will cherish for a long, long time. She will be greatly missed.
Danner meeting Anna for the first time when she was six days old :-)
One of their last pictures together on December 21st when Anna was 4.5 months old
It's pretty hard to top the birth of our first child in 2015, but watching her learn and grow this next year is going to be quite amazing. :)
I am so bummed to have to be writing this, but I know it's not the end of the world. Tim and I did some traveling out of town this weekend to visit our friends and also to attend our friends' wedding. As usual, I packed up my extra two bags with my treatment equipment, but I forgot my albuterol and HTS vials! Ugh! Of course I didn't realize it until Saturday night when I went to do my evening treatment session. So I did my 30 minutes of Vest with just Pulmozyme and then my Cayston.
Since I know my treatments aren't as effective without my nebulizers (and especially with my growing belly), I decided to just leave my Vest in the car and enjoy a day and a half treatment-free (minus Cayston, I did that three times a day). I felt like I deserved a break since I hadn't skipped any Vest or nebs in 448 days and I'd been feeling so well lately. My mucus production has really slowed down and I've felt like my airways have been very clear for a while now. Wow....what a difference missing 3-4 treatments makes!!!
This morning I woke up feeling a little crackly and had a throat-clearing cough. Now as I sit here, back at home, strapped to my Vest and just finished my albuterol, I'm coughing up more than I have in weeks (which still isn't a ton, but it feels good to get it out). It sounds silly, but I guess I just forgot how important and effective consistent, daily treatments really are! As much as I grumble about not wanting to do my treatments all the time, I couldn't wait to get home to get strapped in my Vest with albuterol flooding my airways. So I'll be resetting my compliance count tomorrow and hope to continue it for the next twelve weeks til our little lady is born.
I really feel like this was a happy accident because it brought me back to reality for a couple days. It made me realize how lucky I am to have all of these medications available to me and how much my lungs really rely on them. I hope that I'm able to keep this in my mind when I'm a new sleep-deprived mother because I know it's going to be a decision between sleep and treatments sometimes. It's not going to help anyone if I'm not healthy. So I'm going to try my best to do at least one treatment a day when she arrives because I want to be the healthiest mom I can be. :-)
Today is the 410th day in a row that I have completed all of my treatments and not skipped any medications! It's taken me three tries to get this far and I don't plan on stopping any time soon!! I'm doing this for my husband and our Baby Girl on the way! Take that, CF! You've got nothing on me!!
TODAY MARKS ONE YEAR OF 100% COMPLIANCE WITH ALL OF MY TREATMENTS!!!!
I am so proud of myself for finally achieving this goal, especially after getting so close last year! It has not been easy, but completely worth it. I plan on continuing this streak for as long as possible! I'm even more excited to be able to post this while I'm pregnant because that was my entire motivation for this goal! I want to be as healthy as possible so I can be around for many, many years with our child. Thank you to all of those who have encouraged me (and made me), and sat with me while doing my treatments when we were hanging out this year, even if I didn't want to. An hour a day for treatments is adding weeks, months and years to my health, which is more time I can spend with all of our family & friends! This next year might be a bit more challenging, especially come August, but I will do my absolute best to keep up with my treatments for another year!!
Each day of November, I'm going to take some time to recognize at least one thing I'm thankful for - no matter how big or small, then I'll post them at the end of the week. Go here to see the first week. I should also mention, that these are not in any specific order, other than one thought per day.
3) Dr. Maria Dowell, my CF doctor! She is AMAZING! I had a wonderful peds doctor, but I felt that as soon as I moved to the adult clinic, that I was finally in charge of my own health. Dr. Dowell helped me realize that I was in charge of my CF, not that CF was in charge of me. I thought there was no way to gain back lung function that I had lost. She opened my eyes to see that if I took the job of taking care of myself seriously, then I could fight back at CF, and that's exactly what I've done over the last six-seven years since being with her. Dr. Dowell gave me the kick in the ass that I very-much needed to keep myself healthy for as long as possible! She is full of information, extremely understanding, and is a great person to talk to. I know that when I see/talk to her, she has my best interest in mind. I look forward to my appointments with her several times a year, not just to see how my health is doing, but just to sit and talk with her. I appreciate, more than I can express in words, everything that she has done for me, and I hope that we can maintain this great relationship for years to come!
4) Speaking of amazing people, there's my husband, Tim! He's the second 'kick in the ass' that I needed to wake myself up and live my life. To be honest, the first day I met Tim, I didn't have this "oh my goodness, he's the one" feeling, and he was actually the one who pursued me (read about how we met, here). But a few months later, after talking to him one night online, I said to myself, "I'm gonna marry this guy!" and the called my best friend to make sure I wasn't going crazy! Haha!
Here we are seven years later and still as happy as can be. Tim is perfect for me. He laughs at my stupid jokes, and I laugh at his. He 'kept me in line' in college with my healthcare, which motivated me to be the healthiest version of myself, for him. He'll go along with me when I sign us up for 5Ks and stair climbs, and usually beat me. :) He puts up with my excess mucus like a champ and rarely ever complains. ;) He is supportive, a listener, understanding, open, happy, and loving....how could I ask for anything more??
5) Today, I'm going to go with music and the ability to listen to it (I think it's something we take for granted). Without my ability to hear, I'd miss out on all the beautiful and fun music that I like to listen to. There are some days where music just gets me through. Its something I enjoy listening to and singing along with, especially country music. I love that songs are powerful enough to bring me back to a specific time and place, and bring back so many memories and emotions. I love that there are different types of music and like to switch it up a bit depending on my mood. Music is good for my soul. :-)
6) I'm thankful for the opportunity to shoot the Day in the Life Videos with cfliving.com! When I was a teenager, hating and trying to deal with my CF, it was videos just like these that I was looking for! I hope that by participating in these videos, and sharing my story, someone somewhere is getting the little pick-me-up, motivation, advice and/or information that they need to keep themselves going! I never thought I'd be able to do something like this, and it was so fun making the videos! The cfliving people are the best! :-)
And if you haven't seen it yet, here's the latest video on routines & goals. I thrive on routine and schedule, although I still know how to be flexible when I have to be. Having a routine and setting goals for myself keeps me motivated and on track with all of my treatments! Just so happens that today is my 250th day of 100% compliance....haven't missed a vest or neb in 250 days!!
7) Today I'm thankful for technology. I love having my blog, Facebook page & groups, etc, to connect with family, friends and other CF patients around the world. I've met so many wonderful people who I would never have met if it wasn't for online communities and the internet. Today, I'm especially thankful for technology because I'm starting to catch a cold/virus/something, so I was able to email my doctor & nurse this morning to call in some Cipro for me. It's amazing that I'm able to get in touch with my doctor in Chicago and get the drugs I need the same day! I'm also thankful for the advice & information I get from other CFers I'm able to connect with through social media. Several suggested doing sinus rinses when catching a cold (and regularly) to help with sinuses. I bought one while at Walgreens picking up my Cipro and tried it this evening - what a WEIRD feeling! I still feel stuffed up on one side, but I'll keep at it over the next few days to see if it helps relieve my cold a bit faster. Thanks everyone for your help! :)
8) I'm grateful to have a 'recovery' day on Monday. I've got Monday off due to Veteran's Day, and I can already foresee that becoming a very lazy day. I've felt pretty crumby all day today and am looking forward to finishing up this third treatment so I can get to bed. Tomorrow we're heading up to Chicago to hang out with some friends and then we have the CF CLIMB on Sunday! Tim and I will be climbing 58 flights of stairs. My goal is to finish in under 30 minutes, and I'm really hoping this cold doesn't slow me down! I am thankful though, that I'll have Monday of to be completely lazy and get my schoolwork done in my PJs...and rest my legs!
It is currently 3:32am and I just started a treatment. Why? You might ask...because I woke up around 3:00am with this nagging cough that wouldn't go away, which is not typical for me in the middle of the night. So I tried changing my sleeping position, coughing it out, sitting up for a while...anything to avoid having to get up out of bed to get a drink. So while I was laying there trying to think about why I have this annoying cough that won't go away, it hit me - I FORGOT TO DO MY EVENING TREATMENT! I did my normal morning treatment, then later I did a mid-day treatment and was planning on doing my evening one a little later than usual because I threw that extra one in there. But Tim and I went out to dinner and by the time we got home, we sat on the couch and watched Ozzie go nuts play for a while and then both went to bed...I completely forgot about it! I don't remember the last time I forgot to do a treatment! So, of course I got up and I'm doing it right now! I can't throw away 130-something days of compliance! Plus, it's exactly what I needed to get rid of my cough (well this and a little sip of Gatorade).
I just really hope I'm able to go back to sleep at 4am when I'm done...
Woo hoo! No school! Summer break! I can do whatever I want for the next 2 1/2 months! True...but honestly I'm struggling without a routine/schedule. It's so easy for me to lay around all day watching TV without keeping track of time and how much I may or may not have eaten throughout the day. Currently, I'm really trying to gain weight and keep my lungs as healthy as possible, so to keep that up this summer, I've decided to make myself a daily schedule. It's nothing set in stone, there are no times attached to each thing, but there are certain things I need to accomplish each day - this is what I've come up with so far.
TREATMENTS
EAT (breakfast)
30 MINUTES EXERCISE
Shower
EAT (snack)
Run any errands for the day
TREATMENTS
Housework
EAT (lunch)
TV/read/etc
EAT (snack)
Hang out with Tim
EAT (dinner)
TREATMENTS
EAT (dessert)
*I'm going to try to fit an extra treatment in the middle of the day - why not, especially if I'm sitting at home all day.
*I'm going to try to get at least 30 minutes of exercise in everyday - whether its just walking around the neighborhood, going for a run, doing a workout video, something...anything!
*I'm really trying to eat/snack all day long. Sounds glamorous, it's not. I stocked up on protein bars on Monday to help me with snacks throughout the day.
*Now if I have plans for the day, then I'll just make sure that I get in my two required treatments a day and eat as much as possible. This schedule is for my lazy, nothing to do, days...which will probably be a lot of days this summer! :-)
*I tried this yesterday for the first time and did pretty well. I got in three treatments, 35 minutes of walking & running and ate several snacks on top of breakfast, lunch and dinner. It also gave me something to look forward to when I got out of bed. I knew that I had to do my treatments, but I was also mentally prepared to get outside and walk/run around the neighborhood. I like having a plan/schedule/routine. I don't do well with the 'unknown' as much. I think this is really going to help me make the most of this summer! :)
These two kind of go together and there's not much that I can think of to say about either, so I'll try my best!
I know that when I was in high school and college I would skip treatments all the time because I was "too tired." Now that I'm working on 100% compliance (almost 2 years straight), I've done my treatments all crazy times of the night, especially when we're out of town. I know I've fallen asleep while doing treatments before. I've forgotten to take my enzymes before meals. Or, I'll take my enzymes, then half way through the meal I think, "Oh crap, did I take my enzymes??" So then I usually just take a couple more to be sure!
I remember one time when I was little, UPS or FedEx was on strike, so when my mom called to refill my enzymes they took longer than expected to arrive. I remember I didn't have my enzymes for about a day or two, so I remember just having to eat fruit & pretzels (easy things to digest) until they came. Looking back, there had to be someway to get them from a local pharmacy to cover that day, but oh well...
When I was in middle school, my family's insurance got chanced for some reason, so I had to go see a new CF doctor. I was not happy because I was in my rebellious stage and I was "going to see someone who knew nothing about me". At every CF doctor appointment, I have to give a sputum sample (mucus) to see what bacteria my lungs are culturing. When I was younger and not doing treatments, it was very difficult for me to cough up any mucus to give a good sample, so they would have to do a throat culture - where they stick a giant Q-tip thing down your throat to make you gag (lovely). Well this new doctor did a throat culture on me and scratch the back of my throat pretty hard with the thing and I remember being so angry at her!! Thankfully, I didn't have to see her too much and our insurance went back to normal so I could go back to my regular Peds doctor "who wouldn't hurt me" in my adolescent mind! ;)
I feel like I could write a book on this topic...since I was non-compliant for the first 20 years of my life! I'm very proud to say that streak has ended and I'm finally on the right track with taking care of my body/health.
As I child, I was not taught the importance of my treatments (then it was mostly nebulizers and manual chest percussions because the Vest was not made). In middle school, when the Vest came out, I felt like I was diagnosed with CF for the first time because it was the first time that daily treatments were "forced" (as I felt) upon me. I didn't understand why all of a sudden I had to start doing all of this stuff when I didn't even feel sick. And I hated that the treatments made me cough because then that made me feel even less 'normal' like I had been for the past 13-14 years.
It was a constant fight between my parents and I throughout middle school and high school. I came up with every excuse in the book: "I just ate and it hurts my stomach; I'm tired; I have homework; they don't even do anything for me; I want to go hang out with my friends"...I was very rebellious against doing my treatments because I did not want that to become my 'normal' or part of my routine. I did not want to accept CF as a regular part of my life - I wasn't ready.
What I didn't realize then, that I do now, was that I could have been making myself even healthier and feeling better than I was! But I feel like every person Cystic Fibrosis needs to learn this on their own. Sure they're going to hear it from their doctor, but it's something they need to realize on their own time. From my experience, it seems like a lot of CF teens go through a similar stage that I went through, and I'm sure our parents were scared out of their minds because we're not taking care of ourselves. But if it takes seeing their PFTs going down, or maybe as extreme as a hospital stay to get that wake up call, then sometimes we need to realize this on our own to then take ownership of our health.
Turns out that I wasn't ready to take complete ownership of my disease until I met someone I wanted to spend the rest of my life with. I didn't want Tim to have a sick girlfriend in college. I didn't want him to be embarrassed by me, and I didn't want to hold us back from doing normal things together because I was sick. Being with Tim in college was (and is still) my motivation to keep myself healthy. I want to be around for/with him for as long as possible. What kind of wife would I be for him if I neglected my health?
So if you're a cyster or fibro who's struggling with your treatments, my advice to you is find your motivation. What do you want to do with your life? Will you be able to do that if you're not healthy? Set goals for yourself - start small, but setting goals was a huge part of how I became so compliant. And start now. There's no point in saying, I'll start doing all of my treatments next week -- do it now. It's not easy, but it is possible! NO excuses and don't give up!!!
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!
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. :)
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. :-)
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! :)
January: Tim was tested to see if he was a CF carrier and the test came back negative, yay! Also, Kalydeco was approved by the FDA for CFers with the G551D mutation(which I have)!!! February: Lots of snow, a doctors appointment, and my first blog award. March: I started running outside and planning for the 2nd annual DeKalb Great Strides. I unfortunately had to reset my compliance count after forgetting some albuterol over a weekend out of town. I was at 215 days! April: DeKalb Great Strides event went very well and raised over $20,000! There was also lots more running/training for my first 5K. May: I applied for teaching jobs like crazy, ran some more and registered for Brett's Run (5K). June: I completed my first 5K! FINALLY got my first teaching job!! (This was a great month!) July: We started planning for our move due to my new job, and I started bringing items into my new classroom. August: The big move (about three hours south), the first day(s) of school, and motivated myself to keep running by signing up for another 5K. September: I completed my second 5K (The Shoreline Classic) about a minute faster than my first, signed up for the Glo Run and Turkey Trot. October: Tim and I celebrated our two year wedding anniversary, and I developed my first chest cold of the season. November: I completed the St. Louis Glo Run, our local Turkey Trot --and if you're counting, those were my 3rd and 4th 5K's of the year -- and I won a turkey at the Turkey Trot! :) December:I won Bears vs Packers tickets and attended my first Bears game! I developed another chest infection due to my lovely, germy class/job. Oh, and we all survived "the end of the world". :-)
Overall, I'd say this was a pretty excellent year for me! I was able to accomplish/achieve many of my goals this year. I'm still working on getting my lung function up into the 90s and gaining back the weight I've lost from my added stress this fall. But these are things that I'll continue to work on in the coming year. I'm currently at 301 days of 100% compliance with my treatments - I'd say that another great accomplishment. This year was spent on trying to make myself the healthiest I could be by exercising and staying on track with my treatments. I plan on continuing my exercise this spring, while I focus on weight gain this winter. Here's to a happy, healthy, productive 2013!
The other day I was looking at my other pages on my blog (goals, heath stats, compliance, etc) and I realized a few things:
I have met two of my goals this summer: Completed a 5K and I got my first teaching job! Woo hoo!
I'm also getting pretty close to "making exercise a normal part of my routine". I'm still working towards this one because I did slack off a bit after my 5K in June, but I've been doing really good the past couple weeks with running two days, then resting one day.
On July 31st, 2011 - one year ago today - I started my 100% compliance. Although in March I forgot to bring some nebulizers on a weekend trip, I have not missed one treatment otherwise - which means that I have completed all of my treatments for 363 out of the past 364 days. That's 726 treatments = 363 hours = 21,780 minutes = 99.73% of my treatments over the past year! Pretty darn close to 100%! I have to say I'm pretty proud of myself for accomplishing this! I hope that on March 5th, 2013 I am able to say that 99.73% will turn into a definite 100%!
I am very sad (and mad, and disappointed) to report that I have to reset my compliance count. :-( This weekend Tim and I went out of town to celebrate his grandma's birthday and his great-grandma's 98th birthday!! We carpooled with Tim's aunt and uncle, so when I saw them in our driveway Saturday morning, I grabbed all of my things (about 3 different bags - one for Vest, one for clothes, the other for nebs) which I had all packed up and ready to go, and we were on our merry way. It wasn't until Saturday evening when I went to do my second treatment for the day, I realized I left most of my nebulizers and viles on the table - still drying from my morning treatment!! AHHHH!!! I was so MAD! All I had with me was my Pulmozyme for that evening, but no Albuterol for that treatment and the morning one, and no Hypertonic Saline for my Sunday morning treatment. I did my Vest for thirty minutes like I usually do, that evening and Sunday morning, but it definitely wasn't as productive without my nebs.
When we got back last night, I did my regular round of treatments with all of my nebs, but I'm resetting the count for today since this is the first full day that I'm back to doing everything. I made it 215 days without missing a single Vest or nebulizer treatment, except in January when I had my little bought of coughing up blood and I was ordered by my doctor to stop treatments to give my lungs a break. I know it's not that big of a deal health-wise because it's not like I missed them for an entire week, but it just kills me that 215 days of hard work can be thrown away by three little nebulized viles and two nebulizers that got left sitting out. Of course, now my goal again, is to make it another year without missing anything!! - unless directed by my doctor.
Our new team shirts this year!
In other news, the weekend was great! We were able to see a lot of family, I passed out most of my Great Strides team shirts and ate a lot of food! :-) I'm really looking forward to this year's Great Strides walk in our town because it's only the second one out here, but it looks like it's going to definitely be bigger than last year! I've got a ton of people from my work registered, I'm working on getting the community involved more, and we're planning on doing a school-wide fundraiser at my work the week leading up to the walk! I'm very excited at the progress we're making and I really hope we meet our goal of $25,000 this year! If you'd like to make a donation to my team (Colleen's Friends & Family) please click on our team name - no amount is too little. The other day I was cleaning my nebs and refilling my vitamin/pill organizer and I realized how much 'equipment' and pill bottles I have everywhere, so of course, I took a picture of some of it.
THIS is the reason your donations are so important to me
This picture includes my nebulizer pieces, all vitamin, pill and medicine bottles and my Eflow pieces. It does not include, my Vest, nebulizer machine, Eflow machine, and all of my nebulizer viles. All of this stuff is so normal to me, I sometimes forget that other people don't have this stuff all over their houses too. I have all of my medications in the bathroom in containers, my nebulizers and pieces in the kitchen and on the kitchen table (to dry), my pill organizer and enzyme bottle always out on my kitchen counter, and my Vest and nebulizer machies always plugged in and ready to go at my desk. There's not a day, or really an hour, that goes by where I'm not physically reminded by my CF by something laying around the house, let alone taking my enzymes and/or coughing.
I cannot wait for the day when CF stands for Cure Found and future generations will not have this as their 'normal'. I am in no way trying to complain about the things I do daily to keep myself healthy, again because it is what I am used to. But for those who don't have CF, or are never around it, this is what it looks like. This is why it is so important to me (and for me) to have people make donations to the Cystic Fibrosis Foundation & Great Strides. I would not be alive today if I didn't have all of these medications available to me. These medications would not be available/created if it wasn't for the money donated for research. So thank you to anyone who's ever donated to CFF because you're helping to keep me alive! :-) Please consider making a small donation to my Great Strides Team Page to support the CF Foundation in helping make CF stand for Cure Found!
Finally, this Thursday I have my next CF clinic appointment where we'll be thoroughly discussing Kalydeco as an option for me -- another amazing creation from the donations of people like you! :-)
First of all I want to say how excited I am that I hit 200 days of compliance with my Vest and nebs yesterday!! Of course the past month or so there have been a couple days where I've only done one treatment in a day, but that was because of my little bought of hemoptysis which I'm happy to say has been gone for a while now. I'm still counting those days as being complaint because I was following doctors orders!
Today has been pretty eventful so far and it's only 3:15. I had the day off work today due a teacher institute day, so I've been taking full advantage of it. I woke up at my usual time of 5:45 today because I had two appointments this morning beginning at 7:45. I got my treatments done, finished my '30 days of blogging' post, got dressed and headed out the door. I had to be at the local hospital at 7:45 to begin my oral glucose tolerance test at 8am. This is a two hour test that tests for diabetes. Patients with CF have a higher chance of getting Cystic Fibrosis Related Diabetes, so my doctor wants me to get checked annually to make sure that I'm not developing CFRD. This is the second time I've had this test done and I'm really not a fan! I had to fast for 12 hours and if you read my post about irritating things, you'll know that you shouldn't mess with my food schedule. I couldn't eat breakfast this morning before the test, so I wasn't a happy camper, but I survived.
Just looking at this is making my stomach turn.
First they make you give a urine sample to make sure there's no sugars in you, then they take your blood and make you drink the most disgusting "orange" flavored glucose drink. (Every time I burp, I still taste that nasty stuff!) Then an hour later they take my blood to test my blood sugar, and then after another hour they take my blood one more time; so that's three pricks in three hours. The last time I had this test done, I think they had to poke me about 7 or 8 times because they kept missing my veins and I was not happy! This time, the lady was awesome and only had to stick me three times. They should be faxing the results to my doctor this afternoon and we'll discuss the results at my next clinic appointment in the beginning of March.
My second appointment this morning was to get a bone density (Dexa) scan. I've had this test done a couple times in the past also and it's to make sure that I am not developing Osteoporosis or the milder form called Osteopenia. I think it's kind of like an x-ray, but there's no vest or anything that I had to wear. I just had to lay down on the table and the machine scaned my legs/hips - very easy. A few years ago when I had it done, the results showed that I had Ostepenia so my doctors put me on 2 calcium + D vitamins a day. I had the test performed in December 2010 and it showed that I had normal bone density! I didn't get the official results from today's test yet, but I took a peek at the technician's screen and it showed a little mark in the green area, so I think my bones are still going strong!
After I left the hospital I met with Michelle from the Cystic Fibrosis Foundation who is in charge of the DeKalb Great Strides walk this year. We talked about the progress being made about local sponsors, donations and how many people/teams are signed up so far! Looks like we're doing great so far with everyone signing up, but now it's time to focus on bringing in those donations and getting some companies to donate/sponsor us for the walk. I'm really excited about the progress we're making, but there's still a lot to be done. I'm planning on going around the town on Monday to a couple different businesses to see if I can get some more sponsors and donations. Oh, and for those of you on Colleen's Friends & Family, the t-shirts arrived today in the mail, so I'll be getting those to all of you shortly. :-)
And because all of that wasn't enough, I decided to take advantage of the above-average temperatures today (about 50 degrees) and go for a run outside. I ran/walked the Great Strides route which is about three miles. It was harder and much windier outside than I thought it was going to be, but it still felt really good to get outside to run. It was also nice to run outside because I was able to cough and spit while running (sorry to be gross, but it's true). When I run in the gym, if I cough and bring up something, I usually just have to swallow it because I don't want to gross out the other people there. Running outside was excellent airway clearance and I think because I was running against the wind at some points, my lungs worked even harder than on a treadmill. I'm still going to keep running at the gym, but I'm going to try to keep increasing my outside running time each week, until it's warm enough to always be outside, to get myself ready for my first 5K. I've found a 5K in a local town that I want to sign up for that's June 16th - so I've got about four months to get my butt in gear!
I cannot believe that I've had this blog for an entire year now! 2011 has definitely flown by this year - 72 (now 73) posts later, I've learned so much about myself in this year of writing, it has been amazing.
There have been some ups: Helping organize the first annual Great Strides in our town (and huge support from my family, friends, co-workers in raising money), our new apartment, the amazing development of Kalydeco!, we adopted our cat (Archie), celebrating our first wedding anniversary, becoming an aunt for the second time, I became an organ donor, and of course the beginning of a new me: 100% compliance since July 31st (153 days) and the addition of my exercise routine = increased PFTs!
And some downs: Several interviews but no teaching job, lots of doubts/worry about if having a child is the right thing for us - baby w/ CF or not?, and crappy/smoking/nasty neighbors.
But the 'ups' have definitely out-weighed the downs this year, and I cannot complain about that one bit. This has been a wonderful year of reflection and motivation for me and I appreciate all of you reading and commenting on my posts. I can't promise another 70-something posts next year, but I'll try my best. :-)
Goals for 2012:
Get my FEV1 into the 90s and keep it there!
Complete a 5K
Keep forging ahead with our pregnancy discussions and maybe become a mommy
