It’s been a long winter, y’all.
January was pretty quiet. I got a few colds but did my best to stay well for my February 3 appointment at Hershey since we were doing a repeat chest CT to see if what was in my lungs was from a viral infection or if it was whatever has been growing in there.
I will note, toward the beginning of the month a lot of my family members got sick with something odd, leading to my mother and niece possibly having pneumonia, but it was different than normal. Some said it was a viral infection. X-rays said my mom didn’t have pneumonia, but it sounded like she did. I had a feverish feeling and a sore throat along with fatigue, but I took a bath when I started feeling feverish and I think that helped knock it out of me. It was odd, but symptoms now sound rather familiar…
Anyway, February 3 I visited my Infectious Disease doctor in Hershey and we did the CT. It didn’t look any better than the last time I was there, so she decided we should talk about another bronchoscopy. (Not what I wanted to hear since my last two experiences with that did not go well.) She suggested before she talked to my doctors at NIH that she talk to my endocrinologist to find out if she thinks I need kept over night since I have SAI. Last time, they insisted it was standard procedure for patients with adrenal insufficiency to stay the night before and after to make sure they don’t go into adrenal crisis, but let me tell you, if I had stayed the second night I probably would have gone into crisis since they did not treat me properly. It was a struggle and it still stresses me out to think about. I agreed to letting NIH do it IF I didn’t have to stay the night at all, and if they said I did, I would pay to have it done at Hershey instead.
I had my normal blood work done (it was all good) and she scheduled to see me in two months, which would be the beginning of April. The soonest appointment was April 13…that has now been switched to a phone call appointment due to the COVID-19 pandemic.
A couple days after my appointment at Hershey, I contacted NIH to see if they had heard anything about my test results for genetic testing yet. Apparently wherever the tests were sent to re-tested some things in January so supposedly that’s what’s keeping us from getting results. They also said they were planning to look at my tests from Hershey soon, so they could determine if they think I need a bronchoscopy or not. I still haven’t heard anything about that.
I saw my endocrinologist at the end of February. She agreed that I do not need to stay the nights if I go to NIH and have a bronchoscopy. She also was kind enough to up my hydrocort dose so I can take as much as I need without stressing about running out of pills. I’ve found 10mg in the morning, 5mg in the afternoon, and 2.5-5mg before bed works best for me, and she likes that dosage for me as well. I am allowed to take more if I need to for when I am sick, if I get hurt, or for stress.
She told me about the phone call she had with my ID doctor, ID called my endo, endo had to call back and was given ID’s cell number to call back. She wasn’t in her office and able to look at her notes so she couldn’t remember my last name. She told my endo, “I was calling about Katherine…uh…I can’t remember her last name. You know, Little Katherine!” and yes, my endo knew who she meant by “Little Katherine” so now that’s apparently what my doctors know me as.
I also had a dentist appointment somewhere in between those two February appointments. I needed two fillings and my wisdom teeth out, I got the fillings on March 17, but wanted to wait to figure out how to handle having oral surgery with SAI and try to figure out some insurance things. My endo says I can just updose on my own, it should be fine, so I am hoping it will be. I still haven’t made an appointment because all this craziness now happened so I’m avoiding going out when I can. Other than chiropractor appointments, March was quiet and I feel like those will be the only future appointments I will actually have in person for a while.
I am technically considered high risk, but I am also an essential worker. The church I work for has been letting me work from home mostly, but I’ve been doing two days in the office a week still. There’s only so much I can do from here! The church is hardly being used and the days I am working are days others aren’t there, so I am not worried about going there. Andrew has been working from home for two weeks now, but he did go to work yesterday. He took a shower before he would even hug me though, so don’t worry.
Being home hasn’t bothered me too much, but another month of it and even my introverted self will be ready to be out and about. Thankfully Andrew has been staying in his office and doing his work, and I’ve been wherever I want to be doing all sorts of things, but keeping up with work emails.
We shall see what happens in these next three months. I hope you all stay well and inside unless you can be outside in the sunshine. I pray you find joy, peace, and rest during this time!