Five Feet Apart Reflections

I went to see Five Feet Apart Friday night. I have never been so nervous and excited to see a movie at the same time. I put a lot of pressure on the movie, because having light shed on cystic fibrosis is something that I have been wanting for a long time. Sadly, most of the time when it is mentioned in a TV show, it leaves me feeling disappointed. So the fact that a big Hollywood movie is focused solely on the disease is huge!

So is the movie accurate? Does it really do justice to cystic fibrosis and what it is like living with it? Should people go see it? Will it raise awareness? Yes, yes, yes, and yes!

You could tell how much time and effort they put into researching cystic fibrosis and what life with the disease is like. They showed so many details from the G-tubes, ports, and oxygen all the way to the main character, Stella, coughing up mucus. They showed all the medications and treatments and even went into showing how complications can throw off all the plans for treatment. Even though I am not in the hospital very often, and I don’t have a port or a G-tube, I saw myself in the characters. I especially connected to some of the things they said about living with a disease that is slowly killing you. There is a moment when Will talks about how we are essentially drowning… I so feel that! My biggest fear is drowning or suffocating, and I know it’s because of CF. Poe also talked about how hard it is to be in a relationship because of not wanting to put all of this on another person… the bills, stress, and everything else.

There were also little things that I’m not sure the typical movie goer would pick up on. For instance, when Poe calls Stella sister, I imagined it being spelled cyster, because that is a term that many in the CF community call females with cystic fibrosis. Then there are the interactions with the parents because people don’t really understand what parents of kids with terminal illnesses go through. I don’t know how my parents do what they do for me. They are so strong and have always been my advocates in everything I do.

For those people who did not think the movie would bring awareness, you could not be more wrong. It was very informative. It went into a lot of details without talking over people’s heads. I went with a person who didn’t know a lot about CF, and the movie led to some great questions and conversations. Also, before the movie, people were just staring at me and giving me weird looks because of my mask. After the movie, I was still getting looks, but then they would smile. It was like they had a new understanding of why I was wearing the mask.

There were a ton of teenage girls in the theater when we went, but my hope is that more adults will take the time to see the movie. I know it’s a teenage romance, but the cystic fibrosis part of the movie is so much more important than that.

So please, please, please go see this movie! Take your friends and family with you! I will be seeing it again in the theater for sure.

My Thoughts on Five Feet Apart

People keep asking me for my feelings about the new movie, Five Feet Apart, so I thought I would take some time to write down my thoughts. For those of you who don’t know, Five Feet Apart is a movie that features main characters who are living with cystic fibrosis. This is the first major Hollywood movie to really dive into life with CF at all.

Now, the CF community is pretty divided on whether they are happy about the movie or not. I am so excited about it! This is a huge opportunity to raise awareness and money for CF! People who have never heard of cystic fibrosis are going to see this movie, and they will leave with a greater understanding of the disease. Even with just previews, my 4^th grade students have been asking great questions. I already shared with them that I have CF, and I do a brief explanation so they can kind of grasp what it is. But these previews have truly led to amazing conversations about what my life is like with cystic fibrosis and why I can’t be around others who have it. This is itself has been great for helping with the awareness just in my classroom with my students. So can you imagine what it could do for the general population?

One of the arguments against the film is that it just shows one side of CF. The quote, “That’s not my CF story,” has been used a lot. This view truly baffles me. Cystic fibrosis affects every person differently. How could one movie possibly show everybody’s story? These characters are sicker than I am, but I am not going to frown upon the movie because there isn’t a character just like me. I refuse to be offended that they chose to tell one specific story! There are a lot of people who have CF that do have a similar story. Who am I to say that my story is more important than the one being told in the movie? My story is not more important. It’s my job to share my story not this movie’s. I can share how my story differs from those in the film, and that can lead to even more awareness and education.

So, will I be seeing Five Feet Apart? You better believe I will! I plan on going more than once, because I think it is an important film. It’s a huge step for us as a rare disease, and I will be telling everyone I know to go.

What I want people to understand about their choice to go to work sick…

Everyone is aware that if you are sick, you can pass it along to others. What people don’t think about is how that affects those of us who have a weakened immune system. For you all, if you get sick, you feel pretty terrible for a week or so, and then you move on… no big deal. As a teacher, I totally understand that calling out of work can be more work than actually going. I get it. You have to get a sub, make lesson plans, remember to write down when each student has somewhere they have to go, write down all the details of a day that you just do without even thinking, and so on. So, teachers are the worst about going to work even when they are under the weather.

IV antibiotics that had to be infused every 8 hours.

Now that being said, when you are at work with your contagious germs, you are putting my life at risk. It may sound like I’m being dramatic, but staying healthy is a huge challenge for me as it is, without extra viruses or bacteria taking over. I have been able to stay away from the flu thanks to the flu shot (Don’t get me started on the arguments against the flu shot.)  for most of my adult like with one exception.

Christmas 2012: feeling horrible but pretending I'm ok. 

I caught the flu in 2012. Instead of being down for about a week or two, it took me around 3 months to start to feel back to my normal. I lost 14 pounds which is a huge deal for someone with cystic fibrosis. The August before this, I had 60% lung function… it dropped to 41%, and I haven’t seen 60% since then. My lungs were permanently damaged. I missed a lot of school that year… it would have been more if my sickness hadn’t been partially during winter break. I had to do IV antibiotics for 2 weeks. Then I was put on an oral antibiotics and prednisone for 2 more weeks, but it was still 2 months before I started to see any real improvements in my lung function.

Now the flu and other viruses are spreading around our district like wildfire. I’m truly scared of catching either. Yesterday, I wore a mask at work because I know there are multiple people at school who are sick. With the threat of more being there today, I chose to take the rest of the week off to hide from all of the germs. I can’t risk my life to be with my students, and it breaks my heart that I can’t be there with them.

So I just encourage you whether you are a teacher or not, think about what your choice to go to work sick means for the people around you. Do you have someone at your work that has suppressed immunity or is especially vulnerable to getting sick? If you must go to work, please make sure to take precautions to not spread it those people. Use the CF rule… stay at least 6 feet away, and wipe down things you touch that they may come into contact with.

Same Numbers... Different Appointment

So I'm behind on writing this post. I had my CF clinic appointment on Wednesday at Vanderbilt, and as is pretty usual for me, I have been feeling crummy with extra congestion and lots of coughing. Just like in January, my lung function was back down to 32%. The difference between the two appointments was that I was mentally prepared for this one. I knew my lung function was low, and I already had a game plan in mind to discuss with my doctor.

First things first, he asked me about antibiotics. After a brief discussion, I let him know that I would rather hold off on antibiotics if at all possible. I hate going on antibiotics because they always tear up my stomach and bring up more issues on top of what they are trying to fix. My doctor agreed to let me wait a little longer before going that route since everything else seemed to be going alright. My weight has been steady, my lungs sounded good, I've been working every day, working out 4 days a week, and playing kickball 2 nights a week.

I also brought up the fact that for a couple days before my appointment, I had started squeezing in a third breathing treatment during my plan time at work. I asked if we could tweak my prescription for hypertonic saline so that I could continue with the extra treatments and not run out of medicine too early. He seemed to be impressed with my plan and said that he would fix my prescription.

Finally, we discussed Symdeko. We talked about the fact that I haven't seen any real improvements from Orkambi and about what Symdeko has to offer for those that fit this category. We both decided that it would be a good opportunity for me to make the switch. The only obstacle would be getting my insurance to approve it since a lot of companies have been denying it for patients. The next morning, I got a call from the CF pharmacist letting me know that my insurance had already approved Symdeko for me! Luckily, they had a box in stock and would send it right away. I took my first dose Saturday morning. All good vibes, thoughts, prayers that it will be more effective for me than Orkambi are greatly appreciated. I will keep everybody posted on how things go.

Being Sick is a Bummer

I know you have all seen posts (many shared by me) about why it is so important to stay home if you are sick, but I wanted to share my personal reasons for saying this. The last week of school, I caught a head cold... It was just a stuffy nose with lots of sneezing. No big deal right? Wrong. About a week went by with not much change until all of the sudden, I noticed my lungs getting tighter and my cough becoming wetter. I called my doctor to let them know that I thought this head cold had traveled and settled into my lungs. They called in an antibiotic that is known to cause muscle and tendon tears. That meant that not only was I not feeling well, I would have to really lay off my workouts on top of it.

After about a week, I was starting to feel better, and I was pumped! I thought I had kicked this little infection, and things were looking up. Soon, my lungs started to feel more junky and congested again, and I was feeling pretty miserable. Fast forward to January 3rd when I went to my CF clinic appointment, and my lung function had dropped significantly. Bring on 2 more weeks of antibiotics. That next week, I went to work one day, but I left feeling worse and completely drained. I made the choice to take the next 3 days off to rest and hide from all the germs running rampant in schools right now.

The extra rest helped a lot, and I started to feel more like myself. The next week, we ended up having 3 snow days, and I only had to teach 1 day. So again, there was a lot of resting and taking things easy. I have since finished up my antibiotics and had a follow up PFT. My lung function had gone up to 38% which was much better than a couple weeks before.

The problem is that I am still not back to 100% myself. I'm still working to dig myself out of this hole all because I caught a simple cold over a month ago. What seems like nothing to the average person, can be life threatening and serious to those of us who have other health issues to deal with. So I beg of you... if you are sick, sniffling, sneezing, coughing, whatever, please stay home and/or make every effort to stop the spread of your germs. I am terrified of catching the flu, and I am doing everything I can on my side of things to keep that from happening. Please do your part to help also!

New Year... Same Story

Wednesday was my clinic appointment, and like so many times before, I have not been feeling well. What started as a head cold, traveled into my lungs, and I've been dealing with it all of winter break. I had asked for antibiotics and had started to feel slightly better but then went back the other direction. Fast forward to Wednesday... I woke up feeling off... my stomach was kind of queasy, but I assumed it was just nerves. We drove the 2 1/2 hours all the while, I was thinking about what the doctors were going to say about my lung function that I was assuming would be low. Turns out my lung function had taken a bigger dive that even I expected. It dropped from 41% three months ago to 33%.

After a long discussion about my antibiotic choices (risk of muscle/tendon injuries and tears or antibiotic that I had a weird reaction to last time I was on it), we came up with a game plan. I went for the weird reaction so that I can still continue to workout without the worry of major injuries. The doctor also determined that I have thrush after looking at my throat which was probably caused by my first dose of antibiotics. So... just add another little medication to my daily regimen. The good news is that he wasn't overly concerned because my weight is steady, and everything else has been going well.

Lucky me, I was also due for all my labs. So in comes the nurse who looks at my veins and tells me how wonderful they are. Well... they must not be too great because one stick complete with digging around... no blood. Take two in the other arm, still no luck. Bring in another nurse, and take three, nothing. Finally on the fourth try, she got it. They both apologized profusely, but I assured them that it was just how the day was going.

On the way home, I realized that my stomach was still not feeling right. We made it, and shortly after, it hit me... the stomach bug... what a nice cherry on top to that miserable day. Two days later, I have finally started taking my antibiotics and am hoping that things start looking up. I am supposed to go for a follow up PFT after the antibiotics are done to see if there has been any improvement.

Maintaining is Winning

I am a person who has a mindset of always trying to better myself... I want to improve, get better, get stronger, smarter, etc.. I think that is my biggest challenge with living with cystic fibrosis. I am constantly working my butt of to stay healthy and to try to improve my health, and yet, there are so many times when I don't feel like the numbers don't show that work. I have been compliant with treatments, working out, and I was at the beach last week, but my numbers were pretty much identical to my lung function in March. I had really hoped that they would have gone up at least a little bit. It was 43%.

I have to remind myself that with this disease, maintaining lung function is a win... it's a big victory. It's just hard to accept that sometimes, but I am working on it. That being said, I'm not giving up hope that my numbers will eventually work their way back up... that's part of what drives me to work as hard as I do.

In other news, my weight was also the same which is great! My doctor was happy with everything and pretty much told me to keep doing what I'm doing. I go back in September, so I'm going to keep pushing and see where it takes me then.