A blog about living life despite battling Cystic Fibrosis.

HEALTH UPDATE: July 2016

This has been sort of a crazy, exhausting month for me. I was hospitalized for the first time in about nine months! My health and symptoms continued to decline. It was a frustrating thing to realize because it happened so gradually and in a different way than ever before. I had yet another lesson in how to listen to my body. Luckily, my realization of this led me to getting treated. Another monumental life event took place this month, which was doing home IVs for the first time. Look out for a post to come covering that experience!

I was able to take some time in the hospital and reflect on what led to me successfully staying out of the hospital. LISTEN TO YOUR BODY. It is one of the largest and most important lessons that I have learned in life.File Aug 03, 9 29 41 AM I was infamous for “burning the candle at both ends”. I have now learned that it is ok to take a step back and relax when your body needs it. The ongoing lesson of asking for help is still trying to make its way into my brain. I am so lucky to have an amazing support system to help me along the way. In the short term, I have started writing a journal. There will be more on that to come, but it has really made me become observant about my health. Days often feel like they blend together, especially when you get a good routine and flow down.

Lung Health

At the beginning of the month my lungs were very tired all the time. I constantly felt like I needed cough.. the feeling was just ALWAYS there. I was also experiencing a lot more lung cramping than normal. It was getting to be really frustrating to do a lot of anything. Feeling housebound is a very uneasy feeling, especially for someone who is used to doing a lot. The IVs have helped quite a lot with the cramping and I am able to be a lot more active now than I was at the beginning of the month.

PFT Update

Throughout this entire sickness and awful flare of symptoms my PFTs have remained completely stable. It is sort of a curious phenomenon.. When I was coughing a lot and short of breath I was so sure that my PFTs had dropped. Nope. It just goes to show that you have to take into consideration the whole body to judge health, not just the numbers that machines spit out. My PFTs had actually increased a little when I had my appointment that led to my admission. Throughout my admission, where I went from three treatments per day to four, my PFTs remained the same and even dropped a couple percentages. I am really glad that my lung functions have not dropped, but I am a little frustrated that all this work is not raising them.

Cough Update

This is BY FAR the WORST my cough has ever been in my entire life. I have always had a really bad baseline cough as long as I can remember, which has led to me being quite tolerable to harsh coughing. This month has been miserable, though. I was waking myself up just about every single night coughing. The hard cough attacks would leave me severely out of breath and often with lung cramping. It has not been a fun month. Even when I was in the hospital I was having to call for an albuterol treatment when I would wake myself up coughing just so I could fall back asleep. My lungs were constantly begging for my next treatment even though the treatments were only four hours apart. My cough also took two full weeks of antibiotics before it started to improve, which is much much slower than normal.

Mucus Update

I forgot to include this in my first ever monthly update because I have actually had a very dry cough. So I guess that basically sums that up. I have been a little junkier in the mornings, but mostly I have been oddly junk-free. The mucus that I do cough up in the morning is usually pretty dark green, which means infection. The darker the mucus, the worse the infection is getting. While this section was a short update, remember this… Short updates typically mean good updates!

Other Health

File Aug 03, 9 32 48 AMThis is another area that I have been struggling greatly in lately. It is one of the reasons that I can tell that I was getting sicker and needed to be hospitalized. My body has been so hard to read lately, simply because it is acting different than usual. I am having a different combinations of symptoms than I normally do when I need to be hospitalized. So then instead of knowing that your body is acting out, you start to doubt that something is wrong because the set of symptoms is not right. Bodies are weird and mysterious, my friends!

Weight Update

My weight has dropped considerably this month. It was already dropping last month and just continued to decline. Once I started on antibiotics it stayed pretty stable, but I still was unable to gain weight back. My appetite was not all that great for a lot of the month on top of coughing an incredible amount, a.k.a. spending a bunch of calories. Luckily, because of all the weight I gained when I started prednisone, I am at a totally normal weight. My weight is not terribly low The concerning fact was that I was losing the weight at such a high rate while I was making an effort to not do that. Now that the month is coming to a close, I have been able to keep my weight stable!

Energy Update

Most of the month my energy has been total crap, to put it plainly. I never felt like doing anything. Halfway through the month I got sick of it and just started living my life again.File Aug 03, 9 30 22 AM It is so hard to get motivation to move when it makes you feel like a zombie later. I was actually starting to feel like I had more energy, when really I had just started to ignore my body. I am glad that I was able to go camping, enjoy live music, and participate in other human social activities. It is never a nice thing to ignore your body, though. I have apologized to my body – that is very important to do after you have mistreated it! Anyways, as I got some rest in the hospital and after a little over a week of IV therapy, I began to feel my old, normal goofball energy coming back. It is something that has actually been missing from my life for a few years and one of the things about myself that I miss. I am really excited to live out my motto, “Live. Laugh. Breathe.”

Mental Update

This is the first time in my entire life that I have really every experienced any real anxiety. This feeling that I was losing control. How does such a strong feeling come out of seemingly no where? I have such an easy going mind-set that true anxiety is not a common part of my life. I think it is just a mix of sleep deprivation, post-graduate turmoil, and impatience. Growing into true adulthood is such a difficult step. I have been stressing out it quite a lot, even though I know that it will all be ok in the end. Mental health is greatly tied to your body’s overall health.

Please comment and share what kinds of things you guys do to stay healthy!

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