Next time I write a good health update I need to knock on wood afterwards! The very next day after I wrote my October health update, I had an extremely rough week. For the month of November, I was on an extended vacation in Florida. It was a BLAST and I am so thankful that I was able to work everything out. The weather was absolutely amazing, the sights were gorgeous, and I got to spend time with wonderful friends and family. As hard as it was, it was really good for me to relax… well, try to relax. One of the best parts was having some time to work really hard on Finn’s socialization work. We made some excellent progress while we were on vacation. See, I told you I was bad at relaxing!
This month has mostly been realizing that it is probably time to adjust to a new baseline. My new trend is to be on IVs longer than before, feel better for a week, then return to where I was a week later. Of course, I will see what my CF team thinks and maybe there will something else we can try. At my last appointment, we tried the only other antibiotic that my bugs are sensitive to. So we will just have to see at my clinic appointment in mid-December.
Lung Health
Bah, my lungs! They are giving me the most grief, per usual. Many of the symptoms that I normally have are back and just as bad, if not worse. Normal activities are starting to wear me out. I am just tired. My lungs are making me tired. My body aches from the coughing. My lungs and I are just tired. I don’t mean for that to sound depressing, I just want you to understand just how truly exhausting breathing with Cystic Fibrosis can be.
PFT Update
I don’t really have an update for PFTs because I haven’t been to clinic in the last month. There will be an update to this section next month after my clinic appointment. The last time I felt like this, though, my lung function had dropped pretty significantly. I was able to gain some of it back, but not all of it. So, again, we shall see what happens at CF clinic this next month.
Cough Update
Once again, my cough seems to be the bane of my existence! I was SO excited when my cough subsided after finishing IVs the last time. Then, of course, a week later I was up all night coughing my brains out. I am learning to adapt, but no matter how much I adapt it is still exhausting. The intensity of my cough attacks are starting to leave me with battle scars more and more often. I learned that this is called petechiae. The roughest part is not getting a good night’s sleep after being exhausted from the day. Some mornings I seem to wake up more exhausted than when I went to sleep. How does that work?
Mucus Update
I have normally been pretty mild in this area, which is good. I have been a little junky this past month, but nothing that I would consider significant. Definitely increased, but still what I would consider to be mild. My sinuses have still been pretty clear, which is very fortunate. A year ago they were so full of mucus and gunk that I was getting referred for sinus surgery. I am so happy that I was able to avoid that. I haven’t had sinus surgery since I was a kid. We are trying to put it off as long as possible because the first one is the most effective one. After that scar tissue begins to build up in the delicate organ. Right now I am just hoping that my sputum production stays stable.
Other Health
The success of my other health has really been uplifting. I have chosen to focus on those successes to carry me through the fight with my lungs. I never imagined that my spirit would rise as I got sicker. I believe that it is due to the experiences I have had and what I have made of them that has brought me to this point. I am so thankful for the people in my life that have brought me on this path of positivity and continued to hold me up.
Weight Update
My weight had stabilized at the beginning of the month. Now that my cough is back full force, I am having trouble keeping the weight on. My body is working round the clock to breathe and clear my lungs. It takes a lot of the energy that I am putting in my body. I was able to cut down on supplemental drinks for a couple of weeks. I try not to rely on them because they make me so full that it’s hard to eat real food. Plus I don’t want to be dependent on any more than I have to be (if that makes sense). So for now, I am just trying to make sure I always have food on me. Christmas cookie season is really helping a lot too! I think I would be losing weight faster if it weren’t for those tasty treats.
Energy Update
This has been a kind of strange month for energy. Strange in the way that my energy levels are acting in a different way than usual. Normally, when I am coughing a lot and not feeling well, I am just tired all the time. This time, however, I wake up exhausted, lead a fairly normal day, and then am totally out of energy at the end of the day. So basically I am just getting worn out much more easily. I almost prefer this because I am able to carry on a normal, although limited, day, then crash at night. In times past, it would be a struggle just to get anything done.
Mental Update
As disappointed as I am that my health went from being awesome in the beginning of the year to problematic so quickly, I have been super happy. I have been feeling extremely successful despite the health battles I have been faced with.
When Finn and I were down in Florida, we got an amazing amount of training done. I started out the month extremely discourage and truly questioning my decision to train him as a service dog — I still have to write a post about this decision, but I really wanted to make sure everything was right before making the announcement. Then we made some real progress and my fire was restored. Although I am teaching Finn many things, he is teaching me extreme patience and pride in hard work. I was also so happy to spend time catching up with some of my kindest friends. Plus, I got to reconnect with some family that I hadn’t seen in years. It was a truly marvelous vacation.
Another really exciting thing that happened this month was that my post for the Cystic Fibrosis Foundation was published. I was overjoyed when I got asked to do a guest post for the CFF. I never imagined a life where I was writing about my personal experience about living with Cystic Fibrosis. On top of it, I never imagined that people would actually enjoy reading my writing. It has been something that I have really enjoyed exploring and will continue to explore. Thank you to everyone who has supported my writing and sent me positive messages – I truly appreciate it!; each and every one.
Lastly… yes, there’s more – it was a good month! My promotion at work was announced. This has been amazing for so many reasons. Not only do I work with an amazing group of people, but it was perfect timing in my life. I began to explain, but it turned into a very long thought. Therefore, I am going to write a whole separate post about my work experience. So make sure to look out for that!
To chalk up my mental health this past month, it has been so good despite my health challenges because I feel successful. I fight so hard every day for a life and I really saw it pay off this month. We get discouraged and it can be hard to see the end goal. I am here to tell you to just keep your head high. Everything works out in the end. It may not always work out the way you imagined it, but it really comes from finding peace in the life that you are given. I don’t think I would be as positive or as happy as I am if I hadn’t developed this perspective on life. There are many challenges in my life that I could have let get me down. I choose to see the good in each day, whether it may big or small.
