As the month is ending, I have been reflecting on this past month. It has not been one of the better months, and perhaps that is why I have been reflecting a bit more than normal. I have been absent from a lot of activities in my life, including my blog. I was pretty sick at the beginning of the month. It was extremely difficult for me just to function enough to get to work. Through a series of unfortunate events, I was not treated optimally. I have been suffering for it the rest of the month. Although I can function enough each day, some days can be pretty miserable. This month has been full of a lot of coughing and exhaustion. This exhaustion has led me to fall behind in several aspects of my life. However, now I am adjusting to this new health level and getting caught up! I was deciding what exactly I wanted to write about for my first appearance back in a month, and it struck me that it would be a really good idea just give a health update. Not only because it will provide an explanation as to why I’ve been off the grid, but because I am thinking of continuing to give a monthly health update. It’s good to keep track of our health trend and know what is “normal” and what has gotten worse, better, or stayed the same. So these will be fairly short entries, but I think that they are important.

Lung Health

I have been having a decent amount of chest tightness and lung cramping – more than baseline. The “tired” feeling that I get in my lungs has increased in frequency. The feeling tends to come towards treatment time, but has been coming earlier and earlier. I have been getting out of breath from doing simple errands. It used to take me a few errands before it would start to get to be too much.

PFT Update

For those of you that don’t know, PFT stands for Pulmonary Function Test. It is a test that we do at every clinic appointment that tell us how well our lungs are functioning. My PFT results were only down slightly, which for how crappy I was feeling this was pretty surprising. This really goes to show that it is not always about the numbers that the machine puts out that tells us how we are feeling.

Cough Update

My cough is still above my baseline. It is giving me headaches almost every single day. I have had a really bad cough for quite a while now, so when it gets worse it is difficult for me to notice. Coughing to the point of getting headaches most days is not normal for me, though. That I notice. This is something that I wish every day to get better. So we will see what they say about it at my next clinic appointment because the orals that I was on did not get me back to baseline.

Other Health

Cystic Fibrosis causes more damage and stress to the body than just the lungs. Luckily, I have none of the other CF-related diseases that can go along with just the basic lung and GI issues. I think it is very important to take a look at your health as a whole. Bodies can work in strange and mysterious ways. What is wrong in one part of your body may be affecting another part of your body in a way you had no idea was possible.

Weight Update

My weight was down quite significantly. It’s insane how much weight we lose when our bodies are using so much extra energy to breathe. On top of that, my appetite has been way down. I LOVE snacks and thinking about snacking has just been sounding very unappealing. During the last week I have been able to snack a bit more than before. I have been able to keep my weight stable for the last couple of weeks, but haven’t gained anything back. I had a lot of buffer weight du to being on prednisone for such a long period of time. Now that my weight has stabled, we can stop worrying about that. I have been getting a bit more stomach aches than usual, but that’s sort of how it has been lately.

Energy Update

This is the aspect that I have been struggling with the most. I feel like I am tired all the time. I have been sleeping in later than normal while going to bed earlier than normal and getting severely tired in the middle of the day. This has been making it rather grueling to work and keep up with daily life. Pushing myself to get back into my normal routine has been key because I fear that if I am not able to accomplish this I will continue to decline. It is important to stay active and move the junk in my lungs around so that it does not sit and grow infections.

Mental Update

Although I am very proud of my positive attitude and optimistic outlook on life, it is difficult not to get frustrated from time to time. I am most frustrated that the series events at my last clinic appointment. It did not lead to the treatment that would get me back to baseline the quickest. Aside from my frustration, I have kept a positive mental state. I am proud of myself for enduring what I have and working hard to prolong the need for hospitalization a little longer.