It’s fitting that as I write this update, I am currently at the beach. It is my summer update, after all.
Now, don’t look at me like I am crazy and ask, “But what about the pandemic?!” My family and I are in our own beach house on a semi-private beach, so I’ve been around fewer people this past week than I would have been at home. It’s been a much needed week of rest and family time. That said, I’m in the dining room with a playlist of Harry Potter soundtracks on so I can focus. I’m not used to so much background noise nowadays! I hijacked Andrew’s pair of noise-canceling headphones to block out the sound of a movie the other night so I could get some work done, and now he knows what to give me for Christmas!
The only downside to being here is the bugs outside and the lack of tables or chairs anywhere but in the open living/dining/kitchen room. (Kitchen room is now a thing. I just made it a thing.)
Anyway, they say the beach is excellent for people with health problems, right? So maybe I’ll be miraculously healed while I’m here like Andrew prayed before we came. To be honest, I could use it right now. After several months of nothing much happening, today I scheduled my third appointment at Hershey for October. Or, fourth, depending on how you look at it.
The month of July was quiet; nothing too exciting happened considering my health. Then August rolled around and took its toll on me in more ways than one. August 3, I had a telehealth appointment with my infectious disease doctor from Hershey. It was supposed to be a video chat, but for some reason, it didn’t want to work, so we just talked on the phone. She decided to switch me off the “lovely” mustard yellow grossness I got to take every day and put me on one called Dapsone, which is just a simple pill, and LIFE IS GREAT.
I do not miss the Atovaquone one bit, and I am thankful for the five minutes of my life I get back every day now that I’m not taking it. I don’t think my stomach has been as upset, either, which was part of the reason for the switch. I have been accidentally losing weight again. She hopes that switching me onto this medicine may help give me my appetite back.
I couldn’t tell you if it’s working or not because of life circumstances that have taken away my appetite. Still, I can tell you I have fewer upset stomach days, which I will assume is a good sign. She also requested bloodwork during that appointment, which all came back usual, and a chest CT. The chest CT shows that things are still growing in my lungs, so after a few weeks of trying to get in contact with my doctor, I got a phone call scheduling a bronchoscopy. I don’t want to do it, but scans have been getting progressively worse since December, so I guess I need to.
I have an appointment with anesthesiology, and I have to get a COVID test, which bothers me the most out of everything if I am honest. I am opposed things getting shoved up my nose ever since I had candida on my vocal cords once, and they decided to shove a camera UP MY NOSE instead of back my throat. It did NOT go well. At all. So now I have this…I wouldn’t say fear, but hatred of things going up my nose. Sadly, I can handle half a lung getting removed but not things getting shoved up my nose. I guess everyone has a breaking point. A few days later, I’ll have the bronchoscopy, and then ten days later, I get to have an MRI at 8 pm. This is sort of crazy to me, but it’s either then, or 6 am, so I opted for the later one.
I had a telehealth appointment with my endocrinologist on September 1, which is why I have the MRI. I’ve had them before because of my adrenal insufficiency. A few years ago, they found what they thought was a benign tumor at my pituitary gland, the next year, there were two, and the following year there were none. I skipped a year, but since my headaches have gotten worse, she requested another MRI to see if anything is going on that they can see.
I guess I haven’t told you that part. August was filled with migraines. I believe I told her I had fourteen migraine days a month, but I possibly had more like twenty-one or more that month. It was not great, so I didn’t do much because my brain numbs out, hence why I’d been pretty quiet on here.
I had also been having a hard time getting my hydrocort pills for my adrenal insufficiency. My doctor changed my script for that slightly, so I got 10mg pills and my normal 5mg because it’s only the 5mg that the pharmacy is having a hard time filling.
I spoke to her about how I’d feel fine when I woke up, but partway through the morning, I would get dizzy, feel nauseous, lack energy, and experience brain fog. She told me to try taking my morning dose of hydrocort about an hour before I get up for the day, and it has changed my mornings. I feel like a person, so I actually can do things and not feel awful until 2 pm. It is fantastic.
So, it’s been a long three months. There has been good, and there has been not so good, but I would greatly appreciate prayers for the upcoming season. Between the appointments and life changes, this girl is loving hiding from reality for a week. She is not looking forward to going back to life as usual, because real life is heavy at the moment. For now, I’m going to go back to enjoying this time with my family!