eyes and lungs #lupus #stillsdisease

I had 2 doctor appointments yesterday. It was a long day. I’m pretty tired today. I first went to the opthamologist for a follow up about the allergy eye drops and the contact lens samples she gave me. The toric lenses are pretty uncomfortable. I haven’t had a pair of torics that weren’t uncomfortable. To me, they’re like sticking window clings to your eyeballs. The edges are too hard and can feel the lenses all day. I tell eye doctors this but they always seem to insist on trying torics anyway, probably because they are more expensive. I gave them a try anyway and told her they were uncomfortable, and now I’m just going to go back to my usual lenses. My astigmatism isn’t bad enough for them to be necessary anyway.

My appointment with her was very irritating. I probably won’t be going back.

I had some time to kill between appointments. It was hard to stay awake for some reason, which is odd for me. I get tired but I never really get sleepy. I was wondering if the Humira had something to do with it. Also, the eye doctor was poking around in my eyes and putting all sorts of drops in without asking me first, and it made me have anxiety. I could have also been sleepy from that, since my adrenals make me sensitive to stress.

After that I went to the pulmonologist. He seems like a nice doctor. I did a few breathing tests that measure for asthma and lung capacity, and he also listened to my breathing. Those tests didn’t show anything, but since I have shortness of breath and a lot of tightness in my lungs, he is going to do a few more specific tests. He talked about lung inflammation from lupus, and that it doesn’t always show up on certain tests. He seemed certain that we could find out what the problem is without running a million tests. I also already had a chest x-ray and they took some blood.

Tomorrow I will be doing the breathing tests for the pulmonologist, and I will also be doing a stress echo for my cardiologist, so it will be a long day again.


  1. I’m so happy that I can be by your side through every day Jill, together we’ll get through each and every challenge. The answers will come, our team is excellent (well except maybe for that eye person!) and you have your small but mighty family (Joe and Jordan and I) behind you and beside you one hundred percent. We love you baby girl.

  2. JILL, Thinking about you and worried because you haven’t posted anything for a while. I hope you are okay!Let me know how you are doing. Maureen (mo) maureenk83@sbcglobal,net

    • Thank you for checking in with me, it means a lot. I’m a bit burned out on writing long blogs, I’ve just been doing small updates on twitter @chronicallyjill I’ve been fighting vestibular migraine for about 8 months now, it’s been devistating honestly. I’m on meds now and slowly making a bit of progress although still not to a functioning level I’d like to be at. I am ok, just trying to keep moving forward, thank you for reaching out ❤ I hope you are managing well.

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