This has been a pretty frustrating month for me. My home IVs ran into the month of August – totaling 16 days on IVs, which is pretty long for me. Normally my body heals and reacts faster than that. Not only did I have to be on the IVs for a while, but a week after I was off of the IVs my symptoms came back. As frustrating as this month has been, it has allowed me to learn to adjust and adapt. After all the hard work and therapy I have done, it is time to realize that I am most likely at a new baseline.

Lung Health

This is the department that I seem to always have the worst symptoms. My overall lung health is certainly not as great as it once was. I am seeming to have more and more problems and working harder and harder to preserve my health. Up until this last year, the more work I did the more stable I seemed. Unfortunately, this is not so much the case any more. Being on my feet is getting to be less enjoyable. This makes me pretty sad because I love being on my feet and being active. Yesterday I had a lung cramp that was the worst I have ever had and lasted for almost 24 hours. It started after I had been on my feet all day and was running around trying to do one thing after another. Hopefully this is an isolated incident.

PFT Update

After completing my 16 day course of IV antibiotics, my PFTs had gone up slightly. Nothing crazy or anything, but I was glad that in the end they did end up going up some. This was especially nice since my PFTs had not dropped much, if at all, before starting the IVs. It was basically just a little boost. I have no idea where they are at right now as my next clinic appointment is not until October. I am hoping that they have not dropped too much since my symptoms have returned.

While I am happy that my lung function has not dropped, it is frustrating to work so hard and see them stay the same. I have been doing extra treatments and regular exercise. Essentially spending a lot of time and energy on preserving, in an attempt to improve, my health. Hopefully some day my lungs will realize that I love them and that they should love me back!

Cough Update

Well my cough was better for a week. A whole freaking week. I hate when I get my hopes up that my cough will improve. I am thankful that my body is getting used to the coughing. A week after I ended on the IVs my cough returned full force. I was up every single night that week coughing my brains out and having to do 4am treatments. Luckily, I was no longer waking up in the middle of the night by the next week. The ridiculous cough still exists, but my body has decided that I am now allowed to sleep through the night. The hard coughing in the morning is usually the reason that I wake up, though.

I am also super thankful that I am not one of those people that throws up from coughing too hard. I definitely used to get extremely nauseous when I would have a hard coughing fit, to the point where I would have to pull over on my way home from work. The nausea has resolved itself in the past 6 months, so I think my body is getting used to the intensity of my cough attacks. Has anyone else noticed their bodies react less to cough attacks over time?

Mucus Update

Even with all of the crazy coughing I have been doing, I still have not had blood in my mucus. I may have had a spot once after a particularly long weekend of running around and frequent, hard cough attacks, but nothing more to mention. My cough is still dry, meaning that I do not cough up any or much mucus. This fact still makes me question WHY I am coughing so much. Normally I would be coughing up a lot of mucus meaning infection, which would just make sense. Where would the fun be in that? Why would a body want to make sense? Maybe I have more inflammation, but I have no idea. I know that my ABPA is not acting up, which is what I was strongly suspected to be the culprit. I guess we will just have to wait and see with time.

Other Health

While my lung health has been struggling, I am happy to announce that my other health is doing great. I think that comes along with adjusting to this new baseline. I feel like I have been struggling all summer with getting used to this place that I am at. Maybe it took an admission to prove to myself that this is where I am at. Whatever the reason, I am so happy to be at peace with where I am at. I am slowly improving my life in these other ways because even though my lungs can try and beat me down, I WILL overcome.

Weight Update

While I was struggling with my weight for a month there, it is getting back to normal. I have not gained any of the weight that I lost, but I have been able to keep it mostly stable. I may be slowly losing weight still, but I have been able to keep it fairly stable. Perhaps I will start keep a little bit of a closer eye on that. At this time I do not have plans to gain back the weight that I lost because it was a lot of buffer weight that I had gained from when I was on high doses of steroids. I am happy where I am, just working hard to not lose any more weight.

Energy Update

This has been a sore subject for such a long time. I am beyond joyous to tell the world that I am adjusting to where I am at. The energy that I spend coughing every day has been so daunting. I thought that I was going to be a zombie for the rest of my life. I have finally been able to kick my butt into gear. Not to say that I do not get worn out quickly or that I have gained energy from some magical place. I just have simply gotten used to the way that I am feeling. Now I am able to do chores instead of lay on the couch. Including finally being able to clean my apartment that has been in desperate need of cleaning for almost a year. The ability to be able to do all these activities that I have not been up to for months is the best feeling in the world!

Mental Update

Since my energy level has improved, or rather since I have adjusted, I have been so much happier. I was so frustrated for such a long time that it feels so nice to be peaceful. Being able to do more activities outside of my house has really boosted my mood. I was getting really anxious being housebound all the time. Being productive has kept my mind happy and busy. I finally feel like I am making real progress with my life and I love it.

What kinds of activities make you feel wholesome and productive?