A necessary evil of a life that is lived with asthma and COPD. Years ago when I was first diagnosed with asthma, it was such a relief to get steroids because it meant that I could breathe!!! Plus, I had more energy than I even knew what to do with. My house was clean, laundry was all caught up…I was getting things done.
Then I started getting all the bad side effects of steroids. The super round moon face, rapid weight gain, swelling in my extremities, uncontrollable emotions and super grumpy/mean. I dreaded the crazy way that they would make me feel. The constant question from my kids whenever I was in a bad mood…”are you on steroids again”? Thin skin and oral thrush, vaginal yeast infections…but, I could breathe, right???
In the beginning, yes I could breathe so much easier with steroids. Not so much anymore. I have been on IV steroids for the last month and am now tapering off of oral steroids and not once have my lungs sounded even remotely clear. Obviously this is due to disease progression in my lungs. The steroids do still help somewhat but not the “magic” that they used to be.
Also, I have been struggling with this dang pneumonia since June and finally showing a little bit of progress. That is great news but it seems like this last year especially there is a always a “but”. Although the pneumonia is showing some clearing there are areas, especially in my left lung that are clearly scarring/fibrosis. This is not something that can be reversed. My current understanding is that it can remain about the same for a long period time or it could rapidly worsen and my breathing will decline even further.
I travel to Mayo Clinic again next week for a post operative appointment from my most recent surgery in May. I have to say that in my opinion it is looking great and has healed perfectly. I will also have additional testing done while I am there.
I am still struggling with the hyperinsulinemia/hypoglycemia and will see endocrinology to see if they have any suggestions. When I was there last and saw the gastroenterologist, he did not offer any hope of that improving unless I was able to eat nonstop throughout the day. So we will see if endocrinology has any tricks up there sleeve…lol.
I will also have more breathing tests and chest imaging done and see the pulmonology department and find out there suggestions for my lungs. There may be nothing different that can be done that what we are already doing but since we will already be up there my Drs here want to be sure to get their ideas as well.
I am trying to turn this into a “fun” trip. My husband will be on a business trip so I am making my sons go with me. They are 17 and 18 so they can drive when I get tired and we are going to take and extended route home and go through South Dakota and see Mt Rushmore and whatever we see to stop and look at on the way. Hoping to make some fun memories!!!!